Quick Update
Submitted by Erika on Sat, 01/16/2010 - 11:34am.
Small changes to last week’s plan…  Emerson’s kidneys didn’t like the switch to her antibiotic schedule and the team decided she couldn’t be discharged on Q6 (administered every 6 hours) IV meds.  Luckily, though, they changed around some other meds & her kidneys, at the moment, are cooperating again.  They opted to keep her a little longer, though, and watch them closely.  That, plus, the meds she needs to go out-patient couldn’t get to us until next week.  So, the new plan is to discharge Tuesday.
It’s been another 4 week admit & I’m going stir crazy!!!!!  I really, really hope Tuesday’s the day!  In big news (shhhhhh… we can’t tell Eme this time), I talked to Dr. B & he gave us the go ahead to re-attempt the Make-A-Wish trip for February!  It’ll be the last attempt.  If we cancel again she’ll have to opt for a non-trip wish.  Of course, I have no idea if she can do it but a Mommy certainly can hope!  As usual this journey is lived one day at a time.
As for transitioning back to Colorado, the current agreed upon “plan” is to stay in Omaha through Emerson’s 1 year post-transplant #2 anniversary, which will be in April.  If she’s doing well at that time we’ll (hopefully) start packing our bags!!  There’s still much to work out between Denver & Omaha concerning Eme’s long term care.  It will not, unfortunately, be a seamless transition.  Emerson is complicated and Omaha is very protective.  I appreciate that & know we all have the same end goal in mind.  Of course, I also have the added goal of rejoining our family.  I’m pretty confident we can get it all worked though.
Not much else to report.  My main goal this weekend is to get caught up on promised replies to all my website friends & also to put more thought into fundraising ideas.  Hope your weekend is a productive one (or a totally nonproductive one, which sounds great tooJ)!
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Brain Mri
Submitted by Erika on Thu, 12/24/2009 - 6:44pm.
sniff, sniff, sniff – your messages are so beautiful & so heartfelt.  What an amazing gift they all are.  Thank you, thank you.  I’m so honored to “know” each and every one of you.  You’re kindness & selfless expressions of love have taught me so much.

I’ve been waiting to update until I met with the neurologist & had results from Emerson’s brain MRI this morning.  Otherwise, nothing here has changed.  Eme is still sleeping.  Her arms and legs are sprawled to the side, her eyes are rolled back in her head, her heart rate is slow.  She woke briefly to transfer into a wagon for the ride to MRI, but slept soundly through the entire procedure – fairly remarkable as most 3 year olds require significant sedation for an MRI.

In a nutshell, the results are abnormal but not in a way that explain the sudden flare up of seizure activity.  What the MRI does show is an abnormally small brain size, increased fluid between the brain and skull, & a decrease in white matter.  As it was explained to me, the brain communicates with the spinal cord, which communicates with the muscles.  Think of it as a “wire”.  That “wire” needs to be insulated or it will short circuit.  White matter is the material that insulates the “wire”.  Without proper white matter, signals from the brain will not travel properly.  What is the clinical significance of this?  The neurologist said it will impact Eme’s development.  He said he expects her to be delayed now on account of her complex medical history and time spent in the hospital.  However, he does not expect to see it so clearly obvious on an MRI.  He attributes it likely to her underlying metabolic disorder & is concerned, but ended by saying it’s a miracle she’s even alive right now (which is a statement I’ve heard many times here & am not terribly fond of – alive and living in the hospital is not the miracle we’d hoped for).
So, back to the seizures… he said her body has taken a tremendous beating in the past several days & it will take time to recover.  He said the best possible thing for her now is SLEEP.  The most important thing, though, is to make sure we’ve stopped all seizure activity.  He increased her anti-seizure medication & is administering it via IV.  We believe the seizure activity has stopped & her vitals remain stable (albeit her heart rate is very slow), so now we wait.  Of course I’m slightly more impatient than most but was told to give it 24 more hours.  If she’s still sleeping then, we’ll re-evaluate the plan.  She’ll stay in the PICU for close monitoring and hourly neuro checks until her mental status starts to improve.
What kicked this all off?  There’s still no obvious infection brewing & honestly no one knows.  I’m concerned.  My gut tells me we’re missing something…
On to news of the season - I had a chance to “shop” for Eme today at the hospital.  Child Life stocks a room with donations received throughout the year & invites parents to fill a stocking for their child.  It’s a great service & allows me to have something for Eme tomorrow morning.  She has many gifts at home, but none here in Omaha.  With any luck & a little sprinkle of Christmas magic, she’ll be awake and alert enough to enjoy them even if only for a few minutes.
As the night closes in I’m curled up in my red recliner, in a dark room, eating mashed potatoes, & watching out the window as a winter storm blankets Omaha.  It looks like Santa will have plenty of good snow here; only hoping it doesn’t slow him down too muchJ.  I just checked with NORAD & it looks like he's currently in South Africa.  Boy he's a busy old man tonight!!  I hope he finds all your homes & that your Christmas Eve, however you choose to celebrate it, is filled with laughter & love.  Squeeze your babies for me tonight – a little harder and longer than usual please, just to make up for the fact that I’m so far away from mine.  And if you have an extra prayer or two to give away, please say one  for Collin & Bradley.  I'll be fine & Emerson doesn't know any better... the boys, though, are so dissappointed.  They are so strong & so brave.  They've been forced to grow up way too fast...
Merry Christmas Eve to you all!!
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Merry Christmas!
Submitted by Erika on Fri, 12/25/2009 - 12:12pm.
Well… it looks like Santa did, indeed, sprinkle a little Christmas Magic on room 5334 as he passed overhead last night.  Emerson looks better today!  She’s not totally herself, but is awake and fussing to get my attention – both very encouraging signs!!
The plan today is to slowly restart intestinal feeds & to switch her anti-seizure medication back to oral form (given through her feeding tube).   
I was awoken to a call from 2 very excited little boys this morning with news of Santa’s good work in Colorado – an electric guitar for Bradley & a Lego Robot kit for Collin.  Good Stuff!!  I was also very surprised to learn that he left behind a little note.  It said Santa’s very proud of how strong they’ve been over the past two years & picked his top elves to fulfill their Christmas wishes this year.  He also said the family had best be together next year because it’s getting a little difficult to keep our whereabouts straight & is very hard on the reindeer when we’re all separated like this!!  What an unexpected & heartwarming gesture from the big man in my lifeJ!
Today my mind wanders to those who’ve lost children here & to the donor families who’ve given all our babies a chance.  I pray their hearts are filled with memories & that they feel the presence of those they lost on this blessed day.  I can’t imagine how difficult it must be…
I’m hoping the magic of Christmas has found its way into your home & that through all the presents and good food you find time to celebrate the true meaning of this day.  Always remember your greatest gifts cannot be wrapped or placed under a tree.  
Merry, Merry Christmas to you all!!!!!
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Ay Yi Yi
Submitted by Erika on Sat, 12/26/2009 - 11:46pm.
Emerson spiked a high fever last night, then again this morning.  Blood cultures drawn returned positive for a gram negative rod infection (again).  They removed her line.  She’s been without a fever since then & was acting more like herself tonight.  Her color is not good, but she was sitting up & playing with her baby.  
Overall I’m calm tonight & think she’ll be okay.  However… the Infectious Disease doctor is worried.  Emerson grew this blood infection while ON 2 very strong antibiotics, including the ONLY one that treats her indwelling gram negative infection.  He started her on one additional drug that’s about as big as they get… only one drawback – it’s toxic to the kidneys and can cause organ failure.  It’s a bad drug for anyone, but especially for a kidney transplant recipient.  He said they’ll draw blood levels every day and dose accordingly.  He was hesitant, but said they’ll do everything possible to limit damage to her new kidneys.
Assuming this is the same infection she’s been growing over and over again (we should have better identification in a few days), I asked if it could be resistant to everything this time.  He looked down & said yes, it’s a serious concern.  I asked what would happen then & he wouldn’t say.  Maybe I don’t want to know…
As for the seizures, Dr. B is on this weekend & doesn’t believe a fever of 101.8◦ caused them (thank you very much!).  I told him Eme was in metabolic acidosis upon arrival at Denver Children’s Hospital.  They said the seizure caused it.  Dr. B said nope – it much more likely caused the seizure.  What caused the acidosis though?  That’s the question I want answered!  Infectious Disease sent out testing for several slow growing mold & fungal infections that can present with seizures.  They don’t believe it’s related to the current blood infection.
That’s all for tonight, it’s turning into a longer hospital admit than we’d originally hoped for.  I also asked Dr. B about the prospect of moving back to Colorado any time soon.  Let’s just say it doesn’t look real promising - lots to talk about with everyone here…
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One Week In The Picu And...
Submitted by Erika on Tue, 12/29/2009 - 3:52pm.
Emerson got her walking papers (well… make that her riding papers, via crib, to the general peds floor upstairs) & I have, once again, bid farewell to the red recliner!!  Luckily, a much more comfortable pull out sofa was waiting for me in the new room & we’ve been getting acquainted all afternoon (think a nice long napJ)!
Eme’s blood infection is, indeed, the exact same one she grows over & over again – a gram negative klebsiella ESBL.  The ESBL classification means it’s resistant to all drugs that normally treat this strain of infection &, as feared, this time it’s again resistant to even more.  In fact, there are only 2 or 3 drugs left (out of an original arsenal of 20+) that will even touch it.  This bug is morphing and growing stronger with every infection & it’s a big concern at this time.  The drugs that are left all have serious side effects.  The one she’s on this time is toxic to the kidneys - they’ve placed a foley catheter and are monitoring her organ function very closely.
Imaging last admission was unable to locate the source of this infection in Eme’s little body.  In a perfect world we’d find it & remove it – if only things were that simple.  Unfortunately, everyone is at a loss for where this is coming from.  It’s obviously living inside her, but where?  How I wish we knew…
Still no answers as to what caused all the seizure activity last week, but tests sent by Infectious Disease are still pending today.
Hope you’re all recovering from Christmas & making plans for a fun filled New Years Eve!!
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New Year's Eve
Submitted by Erika on Thu, 12/31/2009 - 10:30am.
The weirdest thing happened yesterday…
Emerson is recovering from this latest round of infection, & antibiotic treatment, in addition to eagle eye monitoring of her new kidneys, looks to have her here another 12-14 days.  Additionally, after a little discussion with Dr. M yesterday it appears inevitable… we’ll be in Omaha for a while – a long whileL.   So, I decided to fly home to Colorado for the holiday weekend.  Collin has a hockey tournament & I need my car.  I plan to drive back Sunday.
I searched through airline fares and schedules yesterday to book a flight, preferably for today.  It was the craziest I’d ever seen – prices were changing by the hour.  Sadly, though, it didn’t look too promising.  Apparently Denver is a hot spot for New Year’s this year!  With the exception of one early flight, everything was very expensive (& squarely OUT of our price range) – upwards of $1,000 for a one-way ticket!!!  I almost booked a $350 ticket on a flight out of Omaha thru Chicago to Denver with a total travel time of 7 ½ hours (normal trip time 1 hour).  I was checking 5 different sites every 20-30 minutes.
Just as I was losing hope of spending New Year’s Eve with the boys I checked Frontier Airlines (yet again).  Out of NOWHERE, a flight popped up – Omaha to Denver direct departing at 4:30pm (perfect) for $188.  I honestly had not seen this flight, at any price, available on any site (including this one) all day.  Needless to say I booked it immediately.  Well… I went right back to the site & have returned at least a dozen times since & that flight has never been available again – NO seats at ANY price.  The flight isn’t even listed!!!!  And yes, I've quadruple checked the date on my confirmation - it's leaving today, Dec 31, 2009!
Where on earth did it come from??  As I sat and pondered that question last night, I decided one of two things – either 1) the flight actually doesn’t exist or I was double booked (an error on the part of Frontier) and it’s setting up to be yet another travel disaster day, or 2) God sent me a ticket to see the family for New Year’s!  I was hesitant to leave Eme, maybe it was His way of saying “GO”J!  If the flight actually leaves with me on it at 4:30 this afternoon, I’ll seriously have to consider it the act of a higher power.
The only other time I experienced this was after Eme’s code last year.  The first 48 hours were very touch and go - if she were to survive there was question as to whether or not she’d be left with permanent brain damage.  I was told a certain number on the monitor had to be above “x” or she wasn’t getting oxygen to her brain.  The number, sadly, sat below that.  My eyes were fixated on that number.  It didn’t move.  I begged, I prayed, I pleaded.  Then I asked God for a sign that Eme was going to be okay… the number rose.  Then it dropped.  I asked again… the number rose again.  Then it dropped.  Every single time I asked God for a sign the number rose above “x” to the exact same number – every single time.
So, it’s happened again – something I absolutely can’t explain.  With any luck, or make that a little “help”, I’ll be ringing in the New Year with my boys tonight & will be cheering on Collin as he tears up the ice this weekend.  I hope your evening, also, is spent with those you love & that tomorrow starts a new decade of health and prosperity for all!!
HAPPY 2010!!!  
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The Weekend
Submitted by Erika on Mon, 01/04/2010 - 7:08pm.
Wouldn’t you know - I leave Emerson Thursday afternoon & she’s in a great mood.  I get off the plane in Denver and… she’s septic (again).  I get to dinner with the boys and… she’s febrile, vomiting, & not profusing.  I start the drive home and… she’s being rushed to the PICU (no time for report).
The radio is turned down so I can hear the nurse on the other end of the phone line - there’s a hint of panic in her voice, I’m in a state of shock trying to assess the severity of the situation from so many miles away.  Collin is sitting next to me with his head buried in a book, pretending to hear nothing, trying so hard to hide his emotions.  Quietly he starts to whimper then the tears come – they come & they come & they won’t stop.  “Please don’t go back to Omaha”, is all he can muster.  “I just want you to watch me play hockey.  Please don’t go back”.  My heart breaks into a million (more) pieces.  Will it ever be whole again?
In that moment I decide Emerson needs me, but my boys need me more.  I couldn’t disappoint them again.  So, I stayed… in close contact with the PICU nurses in Omaha & in Colorado with my boys.  Where did we spend the weekend?
Friday          9:45 hockey game / 3:45 hockey game
Saturday     6:45 game / 10:30 skills comp / 3:45 game
If you guessed “at the ice rink”, you’re right!!  No complaints here, though – I absolutely LOVE watching Collin play hockey.  These kids are so talented & so competitive.  His team is playing really well this year and Collin had a great weekend complete with a hard-earned goal (just for Mom, of course)J!
I arrived back at the hospital this morning.  They successfully put Eme back together over the weekend & transferred her up to the general peds floor again yesterday.  She’s even in the same room.  I walked in to find her sitting in the crib watching TV – so much happened over the weekend, yet so very little appeared to change.  It’s amazing how quickly Eme crashes  It's equally amazing how well she recovers - and that, in a nutshell, is why we keep fighting…
Lots to write this week, check back often!
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Random Thought For Today
Submitted by Erika on Tue, 01/05/2010 - 11:04am.
I’ve been back one day & I’m tired – make that sick & tired.  I’m tired of Dragon Tales & Barbie Princess.  I’m tired of baby dolls & farm puzzles.  I’m tired of coloring books & play-dough.  I want to wake up to the Today Show.  I want to watch the news - I desperately want to know what’s going on in this world.  I want to clean the kitchen & do the laundry (imagine that).  I want to take a long, hot shower.  I’m tired of living in a box with a 3-yr old, a 3-yr old who screams at me all day long unless I’m giving her my full, undivided attention.  I want to live in the real world.  I want my 3-yr old to be part of that world, but not the only part.  Is that wrong?  I’m going insane…  If I leave I feel neglectful, if I stay I feel resentful.  It’s been 2 years & I’m just plain sick & tired.  On one hand I wouldn’t wish it any differently, on the other I wouldn’t wish it on my worst enemy.  It’s my life, though, & I’m trying to make the best of it.  If only the real world could come to me…
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Echo Results
Submitted by Erika on Wed, 01/06/2010 - 10:02pm.
Bad day today so I’m sticking to the facts.  If I let my emotions take over it could get ugly!
An echo report this morning showed fibrosis (thickening) of Emerson’s heart wall.  This is a new finding.  It is unclear as to whether it’s caused by damage from repeat central line catheterizations or if it’s an infected vegetation.  The official reading suggested treatment should be based on “clinical correlation”.  Certainly an infected vegetation would explain her constant cycle of re-infection – clinically it correlates perfectly.  
Unfortunately, though, treatment for a heart infection involves 6 weeks of antibiotics.  I was told today that 6 weeks on the current antibiotic would result in permanent kidney damage & there are no suitable alternatives. 
The team has ordered a transesophageal echo (TEE) to get a better/closer look at the fibrosis.  This involves a specialized scope placed down her esophagus and is done under general anesthesia.  If, indeed, it’s confirmed to be an infected vegetation then we’ll have to treat accordingly and accept the side effects.  If it’s determined to be damage to the heart wall I have no idea what that means – we’ll cross that bridge if/when we get to it.  The test will be done this week.
I don’t know what to expect… what I do know, though, is that we have to do something differently this time.  Treating this infection for 14 days & sending her out-patient does NOT work.  I’d like to give her a fighting chance at staying out for longer than 10 days.  We’ll see what the TEE shows & take it from there…
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Short Stories
Submitted by Erika on Sat, 01/09/2010 - 10:02pm.
Happy Weekend to all!!
I’m posting several unrelated topics today (think of it as a collection of short storiesJ):

MRS. CLAUS?

First I want to share an unforgettable Christmas encounter.  I’ve been intending to write this one for weeks!
I was at the post office before the holidays.  It was the day, actually, I discovered that all Eme’s letters & packages had been “returned to sender with no forwarding address”.  Needless to say I was upset.  I stayed calm, however, & discussed the situation at length with an employee at the end of the counter.  The line behind me looped around the post office and nearly out the door.  It was a busy day & most all had boxes in hand.  A woman approached the counter to mail a pair of gloves.  She was told to step aside & fill out the proper envelope.  As she stood next to me, searching through her purse for an address, she remarked, “Nothing like waiting ‘til the last minute” & chuckled.  I nodded in agreement and said I had an apartment full of gifts yet to wrap myself.  She said nothing of the conversation I was engaged in with the post office employee.  She parted with a simple “Merry Christmas”, stepped back into line, and was on her way.
After my discussion about the PO box had exhausted & it was clear Emerson’s mail wasn’t hiding out somewhere in the building, I went to the back of the line to mail a package.  I was beyond frustrated & couldn’t believe what was happening.  Then, out of nowhere, the woman I’d spoken to reappeared.  She put her hand in mine & said “this is for your baby girl, God bless her” & walked out the door.  I looked down to find 5 $20 bills - $100!!  Unbelievable!  She could have given me $20 & I would have been astounded.  But no, this complete stranger handed me $100!!  Could it have been Mrs. Claus?  I was sure it must have been.  I looked around in disbelief, expecting to see Santa, his sleigh, or 8 tiny reindeer.  At very least I was hoping to see this woman again & to learn something of who she was, but nothing… she simply disappeared.
If, by chance, that amazingly generous stranger reads this blog, I’d like to say THANK YOU!  I went out that afternoon and bought Emerson a wooden high chair for her baby & a tin tea set.  We had so much fun!  Thank You!!!
As I’ve said many times before, I’m continually amazed by the goodness of the human spirit.  It is one of the most profound lessons I’ve learned on this journey.  People come in all shapes, sizes, & colors.  Some have little & some have lots, but by in large all have big, beautiful hearts.  It is so cliche, yet so true - 'you can't judge a book by it's cover'.  People are so kind & so giving.  That woman reinforced it, as do each and every one of you – your guestbook comments, your cards, your gifts, your thoughts, your prayers…  I’ve been so blessed by all the amazing people God has brought into our lives!

TEE

On the medical front… a cardiologist reviewed Eme’s echo & said that, because of the location of the fibrosis, a transesophageal echo (TEE) would be of no further value.  So, it’s been canceled.  The plan now is to pull the line in Eme’s chest, replace it with a line in her arm, complete 3 full weeks of treatment, and repeat the echo.  Pending the result of the follow-up echo we’ll either stop the antibiotics or continue with another 3 week course.  Hopefully a comparison of the 2 echos will give us more information as to the cause of the fibrosis.  The repeat echo will be done on the 18th.  It looks like our earliest escape date will be later that week.  That’s assuming, of course, a lot of things fall into place, & I certainly know better than to expect that.  So, we’re taking it one day at a time.  For now I know we’ll be here at minimum another 12-14 days and Eme is bored!!!!!!!
As such, I made a phone call to the man at the North Pole & asked if he could deliver her Christmas presents here ASAPJ.  A little elf told me he has a wooden kitchen set (stove/sink & pie cabinet) with her name on it!!  She also has lots of gifts that haven’t been opened.  With any luck, tomorrow will be Christmas day here in Eme’s room.  We’re hoping to move to a larger room to accommodate all the “stuff” that’s coming her way!  Thanks so much to everyone who sent money this holiday season – all together it helped Santa purchase exactly what I know Eme will LOVE!  I also brought several babies in from the apartment & the new high chair.  Add a little table and chairs already in the room & Emerson should have hours of cooking, feeding, and cleaning fun!!

MAKE-A-WISH

I had the most amazing dream last night.  It was one of those very detailed dreams & it was a good one!  I was standing at one end of a long aisle with Emerson in hand. We were wearing beautiful dresses.  At the other end stood Jim, with Collin & Bradley by his side.  Yep – we were getting married (again).  Emerson walked me down the aisleJ.
As I recounted it all this morning, it dawned on me – that is my Wish.  For the longest time I’ve been thinking about Emerson’s Wish, and occasionally I've wondered what my Wish would be.  Well, there you have it…  
Let me elaborate, though – it'd take place in New York City & all our family would be there.  I choose NYC because Jim’s almost 99 year old grandmother lives in Connecticut & can no longer travel long distances.  She can come to the city, though, & no ceremony would be complete without her!  What’s more, she’s never met Emerson and that, also, is at the top of my wish list.  And she’s not the only family member who’s never met Emerson.  Jim’s brother, sister, their spouses, and several nieces & nephews have never met her either.  You might think we’re not a close family, but that’s just not so.  I’m bothered that so many have never met our little angel & think a wedding in the city would be the perfect venue to change that.  It would also be a beautiful way to symbolize the rebirth & reconnection of our immediate family unit.  After the festivities, of course, we’d all fly home together!  In addition to our family – 23 people – you’d also all be invited!!  Actually, that would make it the most amazing wish of all… if each of you attended as well!!!!!
Ahhhhh... if only someone granted wishes for parents living through all this!
P.S. - As I’ve said before, so much of what I want can’t be bought.  For those of you, though, who’ve asked about a spa day… I received a spa finder (www.spafinder.com) gift card (thanks Nicholle!) & would love a few more.  I can add them all together for a long day of pampering - just what the doctor ordered!!

HELP NEEDED

Last and far from least – as you know, we’re expecting our stay in Omaha to extend several more months.  My current hope is to transition home in April.  As you also know, though, that is subject to change.  Far be it from me to plan anything that far in advance!  Unfortunately, we're running out of money in Emerson’s COTA account.  To be clear, all Emerson’s medical expenses are covered.  The COTA fund covers all transplant related expenses such as travel, food, lodging, etc.  We're able to access the money only for pre-approved expenses.  Furthermore, should something happen to Emerson any remaining money in the fund would be re-directed to other transplant needy children.  All donations are tax-deductible.
We rely heavily on this account & quite frankly could not have existed as we have without it.  I’ll write more on this soon, but am asking you to please consider ways you can help us raise money.  I know times are difficult now, but large numbers of small donations add up!  If you’re able and/or willing to organize a bake sale, spaghetti dinner, pancake breakfast, or something similar we’d really appreciate it.
As always, thank you so much for all your support!  We could never have come this far without you!!
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A New Week...
Submitted by Erika on Mon, 01/11/2010 - 11:42am.
For anyone who’s ever wondered or hoped otherwise - I’m not going to apologize for anything I say on this blog.  This is my personal outlet.  This is where I recount this journey for myself.  Yes, it is public & that is in large part so family and close friends can be involved.  Over the course of it all, though, many other wonderful, kind-hearted people have found this site and have chosen to follow along.  I’m so blessed to have made so many new friends!  What I write about is frank and candid & it is my experience.  Many who have walked this path may appreciate it, some may not.  That’s okay.
I decided a long time ago I could be bitter about what we’re living through or I could accept it.  I vowed then to never ask “why me”/poor me, but rather “why me”/what am I to learn from this & how is it meant to change the way I live.  I hope through my posts you’ve come to appreciate your life & those around you a little better.  I hope you’ve slowed down a little & hugged your loved ones a little tighter.  If I’ve encouraged just one person to do that, then every moment spent updating this blog & every negative comment I’ve ever endured was worth it.
Yes, this journey is about Emerson.  Of course it is.  I’ve said umpteen times that this is her battle.  I don’t fight it.  I simply sit by her side and watch.  She’s done it all herself (with the help of an amazing medical team & a gracious God).  That’s not to say, though, this hasn’t been difficult for me.  It’s the most difficult thing our family has ever endured & goes far beyond anything I ever knew happened… ever.  And yes, I have wants and dreams for myself (most of which include EmeJ).  If any parent walking this path denies that they’re either fooling themselves, fooling you, or they’re a much bigger person than me.  I, too, have lost a large portion of my life.  I accept that & I’m not angry for it.  I’d do it over & over again every time.  Certainly I wish this had never happened.  I wish I wasn’t learning these lessons.  Not this way.  I can’t change it, though.  I can only forge ahead and accept it as my responsibility to make something good flow from it.
Additionally, & to all my transplant friends and others who’ve faced chronic illness, please don’t ever compare situations.  You simply can’t do that.  Ours is not better or worse.  It’s only different.  Some of us are single parents, some only feel like single parents, some have other children, some do not… some are far from home, some are nearby… some have lived weeks & months in a hospital, some have lived years.  It’s all relative.  It’s all difficult.  Every circumstance is endured with acceptance & forgiveness.  We all make choices where we can & they all have consequences.  We could never have prepared for this.  We make the best decisions we can at the time they’re made & that’s the best we can do…

Finally, we do have fundraising needs.  It is through the generous giving of so many such as you that our family has been able to endure this.  Travel back and forth between Colorado and Nebraska is the only way we’ve been able to stay connected.  I try to fly the boys out at every school break.  Having an apartment here in Omaha is the way I’ve tried to provide some sense of a “normal” existence for Emerson & myself.  Emerson has spent more of her life in and out of a Nebraska hospital than she has at her home in Colorado.  Yes, we do have a home in Colorado, but the financial strain of maintaining 2 residences on 1 income is more than we can bear.  Fundraising is a lot of work & we are so very blessed to have friends like Amy, Melanie, Katie, Suzanne, and others who have taken on that burden for us.  I know many of you understand all this.  Thank You.
THANK YOU also to all who’ve been thinking of creative ways to help.  From Tupperware, to Scentsy, to Lia Sophia jewelry… WOW – it’s a virtual online shopping mall!  Thank you Deanna, Andrea, and Lara.
** Click on the "Activities" Tab above to view more information about how to order their products! ** 
Additionally, to all who’ve left your email addresses with other ideas – I’ll contact you today!  Thank You ALL!!
Finally, and moving forward, I’m going to make a better effort to send email notification every time I update this site.  If you want to be removed from that list, please simply reply to the email with your request.  And… I’ve had so much positive feedback from the story about Mrs. Claus that I’ve decided to make it a regular addition – amazing encounters & stories of people we’ve met/reconnected with on this journey.  It’s a great reminder of all the goodness in this world.  I’ll do them one at a time, so keep reading… there are lots!
Emerson is scheduled in Interventional Radiology at 1pm for a new line & a new feeding tube.  It’s Monday & a different surgeon is in charge.  I’m hoping for a continuation of last week’s plan, but know that’s all subject to change.  We’ll see… one day at a time!  Hope your week is a great one!!

Who was that teacher in your life?

Everyone had that one teacher, you know the one – the one you’ll never forget, the one who helped you believe in yourself, the one who didn’t just teach, but who really cared.  Well… have you ever seen the guestbook comments from “Annette W”?  Do you know who that is?  Yep, my 5th grade teacher!!  WOW – all these years later (I won’t dare divulge exactly how manyJ).
Thank you so much Mrs. Weiland for the generous & thoughtful gifts you sent to the kids (& for the Panera gift card) this Christmas.  They were all a big hit!  It made me laugh, though… Collin was opening a gift & said, “Who are the Weilands?”  I explained that Mrs. Weiland was my 5th grade teacher (Collin is currently in 5th grade).  He was very puzzled by that.  “Your 5th grade teacher he asked?”  “Yep, mine”.  “Can you imagine Mrs. McMillan finding you when you’re an adult & sending gifts to your children?”  “Um… no” was the response as his eyes rolled back in his head.  The boys both laughedJ!  What a crazy thought!  Indeed, what a crazy happenstance & what an amazing reconnection!  Thank You Mrs. Weiland for everything you’ve done for me & for so many others.  Teachers, for sure, are the unsung heroes in this world!
Who was that teacher in your life??
» Erika's blog

2010 Fundraisers
Submitted by Erika on Wed, 03/10/2010 - 3:37pm.
First, I want to review a few essentials:
1.       ALL money sent to COTA will be available for Emerson’s transplant related expenses

2.       If anything should happen to Eme, all funds will be re-directed to other transplant needy children

3.       All donations are tax deductible – save your receipts!
** CLICK ON “2010 FUNDRAISERS” ABOVE FOR A LIST OF DETAILED WAYS YOU CAN HELP! **
Here’s a summary:
•         Order products online from one of the reps listed under “2010 Fundraisers” above.  All proceeds will be donated to Eme’s COTA fund.  Available products include Lia Sophia jewelry, Scentsy candle products, Tupperware, and Mary Kay.

•         Visit www.EmesYardSale.com.  It’s a wonderful new site set up much like Craig’s List.  It’s a place to buy and sell gently used items.  All money exchanged will be deposited into Eme’s COTA account!!  Do you have a basement full of baby gear with no plans for another child?  Here's where you free up some space downstairs & help Eme at the same time.  Are you searching for something?  A car carrier for Fido maybe??  Look here for a great deal on gently used items & help Eme at the same time.  This site has already raised over $700!!!!!  It’s a very fun & exciting fundraiser that everyone can get in on!!

•         Another GREAT idea… we’re compiling a cookbook with recipes from all our readers!!  Once printed, we’ll sell the cookbooks & all proceeds will go to into Eme’s COTA account.  I love this idea & am super excited to see what wonderful recipes our friends come up with.  Follow the link above to 2010 Fundraisers & look for "COOKBOOK" to get involved!

•         Finally, mark your calendars - we have a Bowl-A-Thon planned in Colorado Springs for April 6th at Mr. Biggs.  We’re asking for pledges - $10 from 10 people would be $100 per bowler.  Add it all up & it’ll be a very successful fundraiser!!  If you live in the area, please consider coming out for an evening of FUN!!

Please contact me for any additional information at transplantmom@ymail.com.
Thanks so much for your help!  It's appreciated more than you could ever know...
» Erika's blog

The Latest
Submitted by Erika on Wed, 03/10/2010 - 3:56pm.
The culture on Eme’s urine returned positive for Klebsiella – the indwelling ‘superbug’ that continues to infect her over and over again.  On a very concerning note, though, this time it tested resistant to Colistin.  Colistin was one of two drugs we had left to treat this organism.  Now it’s gone…
I’ve had some very difficult discussions with the team this week.  This latest development is bad news.  We were hoping to get a year or two from Colistin – it is a very strong (& toxic) drug.  It is also rarely used which means these superbugs have not had much exposure to it.  Unfortunately, though, it only lasted 2 rounds of infection… less than 2 months.
As a result of all this, infectious disease has decided not to treat this current UTI with antibiotics.  It is risky.  However, we can’t use up this last drug on a UTI.  We have to save it for her next round of sepsis.  Also, I’ve thought long and hard about it & am asking the team to pull her central line today.  This is also risky.  She’s still requiring fluids & IV cortisol & may, indeed, require this last antibiotic if the UTI gets out of control &/or if it gets into her blood.  We just can’t risk having this line, though; the stakes are way too high.  If it gets infected we’re in big trouble.  So… I’m asking them to place peripheral IVs at all costs.  It’s a nearly impossible feat & will be nothing short of pure torture for Eme.  In the end, though, if it saves her life it’s worth every kick & every scream.  (Update:  they tried multiple times & there’s nothing… the central line will stay in place for now)
As for me, I’m soooooo burned out.  I just don’t know what to do anymore.  I read the blogs from my ‘friends’ who have lost their children & in those moments I feel so bad for complaining.  In those moments I know I’d take anything just to have her here.  Then I look around at these hospital walls and I feel suffocated again.  I can’t live here.  I can’t manage her at home.  I was told I precipitated this latest infection by not cathing her 4 times a day in Disney World.  How do I live with that?  How do I do everything perfectly so I never feel this guilt?  I’ve always said I have to come out of this with no regrets.  How on earth do I do that??
I’m exhausted all day, but I can’t sleep at night.  I want so badly to interact with Eme, but I don’t have the patience to play 3 yr old games.  I tell myself to appreciate every moment, but I can’t stand the screaming – I can’t get far enough away from it.  There are no smiles & giggles right now.  Several wonderful & well-meaning people have offered to bring me dinner or to take me to lunch, but I don’t have the energy to make conversation.  I did get away for an evening this week & I loved every moment with a very close friend, but it wasn’t enough.  One night away wasn’t enough.
I can’t live like this… but I don’t have a choice, it’s not up to me.  It’ll get better (or it’ll be over) when Eme’s body tells us it’s time.  I have no say.  I don’t know how to do this.  And God help me if it does end... I really don't know how I'd do that.  I honestly don't think I could.  I know there are other people who need me, but it doesn't feel like it.  For over 2 years now it's been just us.  She IS my only purpose right now.  I don't know who I am without her.  Nothing feels right anymore.  This is crazy.
You've heard it all before… I know.  There are no magic words to make it better… I know that too.  Thank you, though, for continuing to check in and for remembering our family in your prayers.
I’m running on empty, & our fundraising account is too.  Please read the important post below for ideas on how you can help.
» Erika's blog

A New Plan
Submitted by Erika on Wed, 01/13/2010 - 10:36am.
Quick update:
We're going to try & switch Eme's IV antibiotic to every 8 hours & see if her kidneys will tolerate it (larger, less frequent doses).  If so, that should make things a little easier at "home"!  I'll let you know.

 

Emerson is going out-patient this week.  Pause…  Breathe…  No cheering, please.  There are no changes in her condition, she is not miraculously healed.  The cardiologist who is now involved said she has an infected thrombus (blood clot) & has extended treatment from 3 weeks then re-evaluate, to 4 weeks with a possible 2 more.  Today Eme is on day 12 of 28 for the initial treatment.  That means we have 16 – 28 more days, depending on the outcome of next week’s follow-up echo.  She’ll remain on the very strong IV antibiotic that threatens permanent damage to her kidneys.  She is also now being treated for c-diff.
Upon news of 2-4 more weeks here, I shut down.  I’ve said it before, I know, but I can’t do this anymore.  I can’t live in a hospital anymore.  Call it selfish, okay.  Maybe it is.  But when I say it this time I really mean it – I can’t do this anymore.  So, I asked the team if I could pleeeeease take her back to the apartment.  I think I know what I’m getting myself into & I KNOW it’s going to be difficult there too.  As a matter of fact, I fully anticipate a similar entry next week.  I’ll be drowning, I know I will.
Her daily care will involve 2 nebulizer treatments, 4 bladder catheterizations, a multitude of meds every 12 hours, several meds every 8 hours, and an IV infusion every 6 hours.  Unfortunately, every 6 hours does not mean 4 times during the day.  Indeed, it means every 6 hours.  Med schedules don’t allow for sleep.  Each infusion will take time to prepare & will run for 45 minutes.  If you do the math, you’ll find it leaves very little time for sleep.  Add to all that trips to the hospital 3-4 times a week for labs to monitor her kidneys.  I don’t know if I can do it.  I really don’t - she very well might be back next week.  I only know I have to try.  (And if you’re questioning, & as I’ve said before, Colorado Medicaid will not pay for any home assistance while we’re out of state – it’s simply not available.)
Emerson is feeling better & she doesn’t want to be here either.  She screams at me most of the day.  She needs to be reprimanded & I can’t do it here.  She’s starting to exhibit serious behavior problems & if I don’t address them soon they’re going to get out of control.  They’re quickly headed in that direction.  It’s easy to treat “medical children” with kid gloves.  It’s tempting to want to forgive all their bad behavior.  I can’t do that, though.  It does no service to her.  She needs to learn these hard lessons like every other child - especially if I ever want her to function “normally” in the outside world.  
I just set up her little kitchen.  I have tons of stuff here.  I can’t believe I’m taking it all home.  I just don’t know what to do anymore.  There are no easy solutions…
Thank you so much to all who’ve offered to help with our fundraising efforts.  Thank you so much!  Please be patient with me.  I promise to get back to you all this weekJ.
» Erika's blog

Crazy Busy
Submitted by Erika on Tue, 04/13/2010 - 6:10pm.
...that pretty much sums up our lives these days.
Emerson is still outpatient!!!!  Wow – this one will go down in the record book (the record book of her life anyhow)!!!!!
Our wonderful nurse friend Katie stayed at the apartment last weekend while I flew to Michigan to meet the newest addition to our extended family.  My brother Geoff and his wife Melissa welcomed Grant into the world on February 12th & he is absolutely the cutest baby ever.  It was a quick trip, but I enjoyed every single second!  This evening a film crew from New Zealand came by the apartment to film us (well, mostly Emerson) for a documentary – yep she’s becoming an international movie star.  Tomorrow we’re driving back to Colorado for 2 appointments at Denver Children’s Hospital – we’ll be home 5 short days.  Then, we’re driving back to Omaha, packing up the apartment, & moving h-o-m-e!!!  Busy, busy month!
It’s a big, big week too… this Friday we’ll celebrate Emerson’s 1 year post-transplant #2 anniversary.  I’m working on a little something to post here in honor of the momentous occasion.  Check back for thatJ.
A big, big THANK YOU to all who came out for the bowl-a-thon last week – we had a great turn-out from Collin’s school!!  We really appreciate all your support!!
Finally, April is Organ Donation Awareness month.  Please take a minute & discuss organ donation with your loved ones.  Contrary to sometimes popular belief, checking “yes” on your driver’s license application is not enough.  Ultimately your family will make the decision.  Make certain they know your wishes!
“Don’t take your organs to Heaven, Heaven knows we need them here!”
» Erika's blog

Could It Really Be???
Submitted by Erika on Fri, 04/23/2010 - 9:48am.
Emerson had her last clinic appointment here yesterday – soooooo hard to wrap my head around it all right now.  My mom & dad are flying in tonight to help pack & we’re planning to be on the road Wednesday afternoon.  WOW!
She did it…. She really did it!  I wasn’t sure she could, but she did!!!
I’m full of many emotions today – mostly I’m so very proud of my little girl & so very grateful for the many people here who gave her the opportunity to fight.
I know I promised a little something special for her transplant anniversary last week.  It’ll have to be a coming home treat instead.  I’ll also have many more sentiments to share once we get through this coming week & I have a moment to pause and collect my thoughts.
For now, I’ve got to start packing.  Uggh….. dreaded packing…..
» Erika's blog

A New Day
Submitted by Erika on Thu, 03/11/2010 - 10:16am.
We’ve had 12 hours of rain, which equates to a good night sleep… which equates to a new & improved attitude this morning!  Those of you who read often know I use this journal as an outlet to express my private & raw emotions.  I write mostly for myself & when I look back it isn’t entries about her blood pressure or temp, but rather entries about my reaction to them that recount this journey for me.  The medical information serves as great historical reference, but the emotions tell the real journey.
Emerson’s white count is up again this morning & she didn’t sleep last night.  Otherwise, she’s tolerating daily increases in her feeds and is back on track to being able to get out of here in the next few days.  We’re still keeping an eye on her UTI & the increase in white count is a little concerning, but for now we continue to watch and wait.  As long as she remains fever free we’re not going to treat.
I talked to several people here yesterday & the general consensus is that Eme can do this.  Indeed I believe she can… goodness knows if anyone can come out on the short side of the statistics it’s Emerson!  The key now, though, is to give her body a break.  She needs to rebuild her strength.  The next infection could be a very dangerous one, so we need to keep it at bay for as long as possible.  We do that primarily by keeping the central lines OUT & by cathing her 4+ times a day.  We do that by moving back to Colorado where we can get respite care & home nursing support.
Everyone seems to be on board with the “plan” & all are working towards the ultimate goal of getting her home asap!  The current stipulation is that she needs endocrine & urology appointments scheduled at Denver Children’s.  Once that happens the team here will start the process of ‘transferring’ care (or whatever exactly they need to do to make this move possible).
I’m playing phone tag with our pediatric endocrinologist back home & am working on getting a referral to a urologist.  It won’t happen overnight, but we should be able to move home next month as planned.
On a final note, I want to pay tribute to the unsung hero through all this – my husband Jim.  I rarely talk about the strain this journey has put on him.  I don’t know how we could have kept it together without him.  He truly is the glue that has held our family together.  He, too, is overwhelmed and burned out.  It’s been a long, hard road, traveled with commitment, sacrifice, & forgiveness – we’ve had our fair share of all three.  Thank you Jim for everything you’ve done for me and for our family… we are all so fortunate to have you in our lives!
I continue to hold tight to the dream that we will all be together in Colorado.  I continue to look forward to the “normal”, “ordinary” days of life.  I continue to believe that Emerson can do this – without that belief it’s hard to make sense of this journey.  Actually, it’s nearly impossible to make sense of this journey regardless, but if we’re able to bring Emerson home & give her some quality of life it will have, at very least, been worth the sacrifice.
A million thanks to all of you.  Your words of support and encouragement fuel me through the difficult days...
» Erika's blog

(Another) Quick Update
Submitted by Erika on Fri, 01/22/2010 - 9:08pm.
We’re “home”!  I’m exhausted but wouldn’t trade it for anythingJ.  Emerson is in a much better mood here & I’ve had my pj day!!  Eme’s white count is elevated & her kidney numbers are up (that’s bad), but you’d never know it – she’s as happy as ever!  She loves to “go” & is walking everywhere… all on her own!  She still has a week of IV antibiotics remaining, which means I still have a week of no sleep ahead.  But, as I said, lack of sleep is a small price to pay for the smiles, kisses, & belly laughs I’ve been enjoying with my sweet little angel.  All in all, we’re great!
For those interested, I’ve got lots of info on how you can help with fundraising efforts to come soon.
Thanks for checking in!
» Erika's blog

Weekend Celebration!
Submitted by Erika on Mon, 02/01/2010 - 11:11am.
I’ve spent days now contemplating what to write… Ultimately I asked myself this question:  Years from now what do I want to remember from the weekend?  Answer:  Smiles, giggles, presents, & a yummy cake.  It was a birthday party in grand White Family styleJ!!
Bradley turned 8 last Thursday & we decided to meet half way (North Platte, NE) Friday to celebrate the big day.  Collin was out of school for conferences & Birthday Boy got to miss a day.  After our two trips to Colorado ended abruptly, we decided not to chance it again.  Instead we opted to drive 4 hours and meet in the middle.
We got a hotel room for the night and Eme and I showed up early to decorate.  This year’s theme was Star Wars!  Bradley arrived very excited to find banners, balloons, & (most especially) presents!!  Even Bella cameJ.  All of Emerson’s favorites - “Dad-eye, Beet (aka brothers), & Lello”… a party for sure!!
We went out for dinner and embarrassed Bradley with a request for singing waiters.  He wasn’t too bothered by the giant brownie & 4 scoops of ice cream with a candle on top though!!  Afterwards we returned to the hotel to open & assemble ALL the birthday presents.  We had adjoining rooms & I told the boys they could stay up (in theirs) as late as they wanted – 2am & they were still building, playing, and battling.  Emerson loved all the activity & they loved being with her tooJ!!  It was Bradley’s birthday, indeed, but I got the greatest gift of all.  The smiles & giggles were priceless!
Unfortunately Emerson, in usual fashion, spiked a fever to 104◦ Friday night.  I brought her into bed with me (afraid she might seize), but she wouldn’t sleep.  Finally about 4am she passed out & Saturday morning she would not wake up.  All the activity of a crazy dog & 2 loud boys and nothing… not even a flinch.  I called the transplant clinic & they said, “Get her to the closest ER”.  The question at that point was whether or not it was safe to drive her to Omaha or if she needed (yet another) life flight back.  Honestly, I couldn’t make this stuff up if I tried.  24 hours – that’s all we attempted.  4 hours – that’s as far away as we went.
Long story short, we made a quick trip to the local ER where she was whisked into a triage room & deemed stable for transport.  Luckily we avoided a helicopter flight back to Omaha.  I’m seriously sooooo tired of all the drama.  Eme is a princess all right, but private planes & helicopters we can do without!!  She was admitted through the treatment center & here we sit again – same room (#6475), same story, different day.
The current thought is that the Klebsiella infection is back.  Her symptoms emerged just one day after stopping antibiotics, & after we pulled her line and re-started antibiotics she looks good again.  I’m waiting for Infectious Disease to consult & am hoping we can manage this out-patient.  This is honestly getting harder & harder to endure.  Especially after a short visit with the boys – I just want to go home.  I’ve been fighting for Eme for so long now.  Maybe it’s time to start fighting for my family.  The team wants Emerson to string together 3+ months outpatient with no hospital admits.  Let’s just all agree that’s probably not going to happen & move on to a different plan.  I digress…
I honestly wish I knew what I do differently from every other mother.  How do others take their children out-patient and stay out?  How do others leave Omaha 4 months post-transplant and only return once or twice, or never at all?  How do they do it?  I want to know… I want to do it.  I really, really do.
As usual, I’m tired, cranky, & overwhelmed.  I need help but don’t have the time or energy to reply to all the wonderful people who’ve offered their support.  Please bear with me.  I’ve had so many gracious offers for help with fundraising and medical/nursing assistance.  Thank You.  
There’s so much more… there always is – encounters to recount, emotions to share.  In time maybe I’ll get to them all.  For today, though, I’m stretched out on a little sofa, watching Barbie and the Twelve Dancing Princesses (again), & thanking God that I have one more day to share with my beautiful little girl, anywhere that may be.
» Erika's blog

Test Results Are In...
Submitted by Erika on Tue, 02/02/2010 - 10:35am.
Now Emerson has respiratory adenovirus too… ah, the life of an immune suppressed child.

Emerson tested positive for c-diff, is growing 2 bugs from her line tip, & has a blood clot in her right arm/chest.  Treatment for the infections includes more antibiotics & treatment for the blood clot will be twice daily shots of Lovenox for the next 3-4 months.  She just keeps getting more complicated…
She’s looking & feeling much better, thoughJ.  We’re hoping to escape this week & finish treatment at our “home” away from home (aka the apartment)! 
» Erika's blog

Anniversary...
Submitted by Erika on Sat, 02/06/2010 - 9:33am.
one I could never have anticipated & one, sadly, not worth celebrating.  Tomorrow marks the 2 year anniversary of this current hospital admission.  Two years ago tomorrow I put the boys on the bus with kisses & a promise for McDonald’s and hockey practice after school.  Two years ago tomorrow I returned home to find Emerson seizing & burning with fever.  Two years ago tomorrow I rushed her to the ER at Denver Children’s Hospital.  Two years ago tomorrow began a journey far exceeding my wildest imagination – filled with so many ups & so many downs, so much worry & so much hope.  Two years ago today was the last day I would spend at home.  It is amazing how suddenly & unexpectedly life can change…
Emerson had been improving all week & plans were made for discharge to our Omaha apartment yesterday.  Indeed Emerson left her room on the general pediatric floor yesterday… she did not go out-patient, though. Instead she transferred to the PICU.  She woke up looking “off” & deteriorated all through the day.  She’s been sleeping now since 11:30 yesterday morning – 23 hours straight.  She looks septic, but she doesn’t have a line.  Blood cultures for now are still negative.  Something is very wrong, but there are no good clues as to what’s going on… at least not yet.  She’s been making unusual, repetitive motions with her mouth.  Her blood pressure is low & she looks acidotic on labs this morning.  Barring any hidden infection, my bet is she’s been seizing again.  We’ll see what the team has to say this morning on rounds.
I’ve had a rough 24 hours.  I was mentally prepared for discharge yesterday… I was not mentally prepared for this.  Emerson does not look good at all.  Her coloring is awful.  In the past they’ve always had a good suspicion as to what’s going on & they’ve always started treatment immediately.  This time they are treating nothing.  They don’t know what to do.  What’s more, Emerson lost her peripheral IV yesterday & after 6 unsuccessful attempts is now left with no IV access.  The team won’t place a central line because of her historically high risk for sepsis, but she literally has NO peripheral access.  So, she sits here today with nothing.  That is very scary for me.  If she crashes there is no way to push meds… no way other than putting a line into her bone, that is.  The measures are getting extreme.  She’s just been too sick for too long.  Is there ever a point where her body just gets tired?  Is there ever a point where she just decides enough is enough?  I don’t know the answer to that, but I’m fearful…
I try so hard to stay positive & I try so hard to trust.  It’s not been easy though.  I’ve watched so many of our “friends” pass & I can’t help but wonder when it’s Eme’s turn.  I can’t help but wonder if today is the last day I’ll hear my sweet little girl’s voice.  I close my eyes and all I see is Jim and the boys surrounding her as she slips away.  I see Collin falling apart.  I want so badly to protect him.  I want so badly to spare him this, to give him the innocent childhood he so deserves.  I am powerless though.  I can’t get the images out of my mind.  I fall asleep & I dream about death.  I can’t shake it.  A great friend once told me it’s the devil trying to take over my thoughts.  I tell him to go away, but still the images will not.  I start to cry & I just can’t stop.  I feel so foolish, but nothing will stop the tears.  Conversely, even the smallest, most unexpected thing brings more…
Please don’t misunderstand me.  Emerson is not gravely ill today.  Something is wrong, but it could ‘simply’ be continuing &/or post seizure activity.  She could well be up and entertaining the team again tomorrow… I, actually, half expect it.  She’s a fighter with an incredible will to survive and to thrive.  I’m nearly certain I could not have endured all she has in her short life.  She is one remarkable little girl & I continue to have great hope for her future.      
So I started this post saying this anniversary is one not worth celebrating, but maybe I’m wrong.  Indeed Emerson is with us today – something we could only have dreamt for 18 months ago, something that seemed a near uncertainty just 16 months ago.  Without doubt this journey has been difficult.  Without doubt we’ve made sacrifices.  Without doubt we’ll be managing the consequences of those sacrifices for many, many years to come.  She’s here, though, & we have hope – still so much fear, but also so much hope.  Emerson began this journey, really, at birth.  She began this admission at a tender 16 months of age.  Today she’s almost 3 ½.  She’s grown up in a hospital.  It doesn’t make sense &, for me, it never will.  My greatest hope today, though, on this 2 year anniversary & through tears streaming down my cheeks, is that quieter days are ahead (or should I say ‘louder’ days - days with more energy and vitality).  She deserves that, she really does…  
» Erika's blog

Afternoon Update
Submitted by Erika on Sat, 02/06/2010 - 3:01pm.
Emerson continues to deteriorate as the day progresses.  Her blood pressures are dropping & they’re no longer able to maintain her without a line.  They placed a femoral line at the bedside, along with a foley bladder catheter, and are now pushing fluids to try and bring her pressures back up.  Her coloring is worse (which I didn’t think was possible) & she continues to sleep.  Neurology has been consulted, but hasn’t shown yet.
I am sick to my stomach and have a splitting headache.  I really don’t feel good at all…  I sat in the ICU waiting room while they placed the line; until memories of 16 months ago came flooding back & I started to relive the code.  I then went and sat in an empty room next to hers - that way I could hear her cries and know she was still breathing.
There are no words, I know…  Your prayers, though, would be greatly appreciated at this time.
Thank You.
» Erika's blog

Evening Update
Submitted by Erika on Sat, 02/06/2010 - 6:13pm.
After a second fluid bolus Emerson’s blood pressure is up – that’s good!  She’s not looking any better otherwise, though.  The neurologist was here & said she’s “severely septic”.  He said he doesn’t care about what is (or more accurately isn’t) growing on the cultures.  He thinks it just hasn’t shown up yet.  She is sweating and clammy, her temps have been low, & her white blood count is not elevated.  He said that’s all very bad news.  It means she’s tired and not able to fight this.  He said if this was post seizure activity she’d be getting better, not worse, & if it was continuing seizure activity her blood pressures would be high.  Moreover, he said you would know.  There’d be no question…
He was rather upset (that’s putting it nicely) that she’s not on antibiotics & called infectious disease to express his opinion and concern.  ID is talking to Transplant.  In the interim, they’ve drawn more labs. I’m trying to sleep whenever possible because when I’m awake I feel like I’m going to vomit.  I’ll let you know what transpires this evening.  Until then I’m curling up in my little red recliner & praying these labs tell us something…
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Sunday
Submitted by Erika on Sun, 02/07/2010 - 1:21pm.
Dr. B walked in this morning & announced, “She’s Addisonian, it hit me at 5:00 this morning”.  Sure enough, a blood cortisol test returned very low – the first markedly abnormal test we have yet.  This is good news, as it is treatable.  What caused this adrenal crisis, though, is the million dollar question.  They started IV cortisol replacement & Dr. B suspects she’ll be looking much better by this afternoon.  Still, though, one doesn’t become Addisonian for no reason.  It is a secondary finding, not a primary one.  She is on IV medication now to cover a wide spectrum of organisms and illnesses, including viral meningitis.  She required 2 additional fluid boluses over night to keep her blood pressure up and continues to be very lethargic.  She is awake and alert at the moment, though, & that is very encouraging!!  For me, I’m going to try and get a little something to eat… it’s been a tough couple days.
Thank you so much for all your words of encouragement & for all your prayers.
» Erika's blog

A New Week
Submitted by Erika on Mon, 02/08/2010 - 10:48am.
Emerson is still looking punky, but is much improved from over the weekend.  The current thinking is that this adrenal crisis was brought about by her infections from last week.  They don’t think there are any new or hidden infections to treat.  I’ll be feeling better when she’s back up and asking for “Lello”, though.  For now she’s still looking spacey, picking at her nails, and occasionally moaning.  She’s not talking or moving much.  She is, however, sitting upJ.  Her coloring is improved, but she still looks pale and weak.
Let me explain what happened this weekend…
Emerson has adrenal insufficiency (aka Addison’s Disease):
“Adrenal insufficiency is a condition in which the adrenal glands, located above the kidneys, do not produce adequate amounts of steroid hormones (chemicals produced by the body that regulate organ function), primarily cortisol.”  ~  Wikipedia
This weekend Emerson had an acute adrenal crisis (aka an Addisonian crisis):
“An adrenal crisis often occurs (when a person who has adrenal insufficiency) is subjected to stress, such as an accident, injury, surgery, or severe infection; death may quickly follow”  ~  Wikipedia
In a nutshell, Emerson’s body isn’t able to produce adequate amounts of a hormone called cortisol.  Our bodies naturally increase production of this hormone during times of extreme stress and illness.  Simply put, it is an increase in cortisol that keeps our organs functioning in stressful times.  Emerson’s body was thrown into an adrenal crisis last week & her body began to shut down.  Her organs needed cortisol & her body was unable to produce it.  Once identified, the team started high-dose IV cortisol which, in turn, started to reverse Eme’s overall deterioration.  I hope that makes sense.  
Thank you so much for all your prayers through this difficult weekend.  With the help of a gracious God, guiding a top-notch team of medical professionals, Emerson appears to be on the mend & again out of immediate danger.  I’m not sure how many ‘lives’ a young girl can have, but she clearly has more than her fair share!
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Thursday
Submitted by Erika on Thu, 02/11/2010 - 11:22am.
I’ve been waiting to get more information before I updated.  Here’s what I know as of this morning…
Emerson transferred out of the PICU and back to the regular floor Tuesday night.  She’s still, however, having trouble maintaining her cortisol levels.  They pulled her femoral line (a bit too soon) & after several attempts were finally able to secure a peripheral IVJ.  So, her cortisol is now being administered via IV.  Despite the change, her cortisol level (reference range 7-25) dropped from 68 to 3 in 24 hours!  This morning it is only 4.  The endocrinologist has been consulted, but he apparently doesn’t see children in-patient at UNMC.  It’s a problem – the Children’s Hospital is across town & that is where all the pediatric physicians are located.  Pediatric transplant patients needing service from a team other than transplant are out of luck.  These two hospitals, in my opinion, need to get their act together & figure out how to care for children here.  Honestly… it’s all of a 15 minute drive.  Still, though, for the most part non-transplant physicians (i.e., Neurologists, Endocrinologists, Urologists…) only see transplant children out-patient.  So, the team consulted with the endocrinologist over the phone & set up an appointment for Eme to see him in clinic next month.  Hopefully she can actually get well enough to get out of here without the hands on involvement of an endocrinologist.  I really believe this is one of her few remaining obstacles.  If we can tackle her endocrine issues I really think she has a shot at staying out of here.  I sure hope I’m right!!
In other news… Collin & Bradley are coming tonight for a long Valentine’s weekend!!  I’m super excited!!  I have lots of big plans.  In place of yet another video game (or the like); I’ve decided to start the tradition of “giving” at holiday time.  My children have plenty of stuff & my intent now is to teach them the value of community service and giving to others.  In that, this Valentine’s Day I made a donation in each of their names to adopt an animal at the Omaha Zoo.  The money donated will help feed their animals for a full year.  I chose a Lemur for Collin, a Gibbon (monkey) for Bradley, & a Penguin for Eme.  They each receive an adoption certificate and a picture of their animal.  I put the pictures in little red frames & we’ll spend tomorrow at the zoo searching for their new ‘pets’ (the very best kind – the kind you don’t have to take home!!).  On Saturday we’re cooking up some V-Day treats in the kitchen, followed by a UNO vs. U of Mich hockey game at the Qwest Center.  And on Sunday we’re driving around town distributing treats and Valentine’s Day cheer to all our friends here at the hospital & elsewhere.  A weekend packed full of fun!!
T minus 10 days and counting till we lift off for Disney World.  I was really hoping Eme could be outpatient this weekend while the boys are in town, but it’s looking pretty unlikely.  We all have our sights squarely focused, now, on getting her healthy and out of here next week for the big Make-A-Wish trip.  The team is very supportive & willing to do just about anything to make that possible for us.  I have a very good feeling this timeJ.  Fingers crossed!!
And finally… I’ve had the pleasure of meeting a wonderful family from New Zealand who’s beautiful daughter, Aria, is just a few months older than Emerson.  Aria was a very sick little girl in desperate need of a life-saving transplant & the entire family traveled here from their home country just a few months ago.  As difficult as it’s been for us, I can’t imagine being so far from home.  Last week, after what seemed like an eternity of waiting, little Aria received her gift – a liver, bowel, pancreas, & 2 kidneys!!  She’s the 5th one here, after Emerson, to receive ALL organs including kidneys.  She’s doing really well right now, but we all know the road ahead will be bumpy at best.  I’m asking, with their permission, that you include this lovely young family in your prayers.
Thanks, as always, for all your support!!    
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Out-Patient!
Submitted by Erika on Thu, 02/18/2010 - 10:23am.
We’re back at the apartment & running around trying to get ready for Eme’s Make-A-Wish trip on Sunday.  The team is behind us this time & it looks like a GO (shhhhhh, still keeping it quiet – we all know how quickly things can change)!!  All in all, Eme is looking pretty good, although she continues to battle problems associated with her Addison’s disease.  She desperately needs to be seen by an endocrinologist, but thanks to good ‘ole hospital politics and red tape has been unable to get the timely help she needs.  It’s a very long story that has me very upset this week.  Emerson’s survived 2 multiple organ transplants and now is dealing with a life-threatening (yet very treatable) endocrine disorder… she needs pills and I need direction.  That’s all.  But somehow the doctors here are unable to make that happen for her.  It’s beyond frustrating.  She currently has an appointment to be seen on March 15th.  Until then, the endocrinologist has given vague instructions (relayed to me by the team) on how to treat her.  I sincerely hope she’s able to get through this trip without the medical attention she so desperately needs.
The boys were here last weekend & we had a fantastically furious timeJ.  We caught a UNO vs. U of Mich hockey game, made heart shaped cereal treats, shopped for & put together Valentine’s baskets for our special friends here (we’re hanging tight to yours, Emily, & hoping to cross paths soon), saw an IMAX movie, served lunch at an outreach mission, and even got a behind the scenes tour at the Omaha zoo!  It was amazing!!  I knew Collin would love it, but was surprised by how much I enjoyed it.  It’s really fascinating to see what happens behind (& underneath) the exhibits at a zoo!
Right now I’m looking at a giant mess & a long to-do list and trying to decide where to start.  I’ve been managing on very little sleep with the sole aid of Advil PM.  Without it, I don’t think I’d sleep at all.  Emerson’s schedule is insane… honestly.  I’m not sure how I’m going to get everything into suitcases and on a plane, but I’m sure it will happen.  It always does!
I’m looking into options for private duty (private pay) nursing here in Omaha.  Unfortunately our C OTA account has run dry.  I’ll update everyone with some fundraising things we have in the works (hopefully before we leave this weekend).
T minus 3 days and counting (fingers crossed)!!!

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Wednesday
Submitted by Erika on Wed, 04/13/2011 - 10:55am.
WOW… we had so many wonderful responses from my last post.  Thank You!  Thank you for your donations, thank you for your ideas, & thank you for your offers to help.  We have the best readers in the world!!  Stay tuned for lots of great stuff to comeJ.  There will be a meeting Friday morning in Colorado to formulate a fundraising plan.  If you’re in the area & interested in participating, please contact me at transplantmom@ymail.com!
Emerson continues to take baby steps forward… & no big steps backwards.  Good Stuff!  We knew this was going to take a while.  She’s having trouble clearing one of the infections from her blood & will probably require a trip to the OR for a new line in the next few days.  They did an upper GI study today & overall it looked pretty good.  There was a small leak out of her stomach & her perf drain filled with fluid.  Otherwise the majority of contrast moved through well.  We are working up on intestinal feeds & will continue to do so.  The base of her abdominal wound is seeping a green colored discharge through the graft.  All suspect it to be a pseudomonas infection.  In all she’s on 4 strong IV antibiotics, & the Klebsiella, for the moment, seems to be under control.
Overall Emerson is uncomfortable (& cranky) – that’s the best way I know to describe it.  There hasn’t been much laughter here for a while.  No smiles either.  Days in this room, quite frankly, have been pretty draining.  It’s tough to gear up for this every morning & despite my best game face, there are days I have a hard time keeping it in.  This is really, really hard.  I know we have so much to be thankful for.  I know being home without Emerson would be harder, much harder.  I try so hard to hang on to those truths, but still I’m growing weary of this seemingly endless journey.  She’ll recover from this latest setback… I have great faith in that.  I just hope I have the stamina to see her through.
I suspect Emerson is experiencing some drug withdrawal from having been on such high narcotic drips while intubated.  I’m sure, also, her drains are sore & her abdomen is painful.  She is still very weak.  We’ve brought her walker in to the room & she has attempted a few steps with the assistance of PT, but mostly she is unsteady even to stand.  She sits in her “la-la” chair (a big round, pink moon chair – she calls it her princess chair) most of the day & colors/draws.  She constantly wants something & I am constantly attending to one of her many whims – feeling a bit more like a slave than a mother lately!
The weather outside has been warming up & the flowers are in bloom.  I’m sure a little escape would do my weary spirit well.  Unfortunately, the monotonous routine of it all has me wanting to sleep my days away.  It’s a vicious cycle that’s hard to break.  I’m going to try though.  I’m going to force myself to step outside these four walls & I have a pretty good feeling it’s going to perk me up!  Of course discharge papers would do it too… hmmmmm… better get outside!
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Fantas“Mic”!!
Submitted by Erika on Sun, 02/28/2010 - 1:58pm.
Oh yes it was!!  WOW!!  I’m eager & happy to report that I was wrong… Eme did not require medical attention, she had no endocrine complications, and as a matter of fact, she did fabulous.  It was quite possibly the happiest I’ve seen her EVER, in her whole life!  A volunteer told us yesterday that miracles happen every day at Give Kids the World, that the village is magical.  It certainly proved to be that for her.  (Now I, on the other hand, spent Wednesday at an urgent care center and was diagnosed with bronchitis & pneumonia.  Ay yi yi… I suppose it was bound to happen trying to keep up with Emerson and her intensely demanding schedule.  Eme and I spent that day in the villa while the boys explored Universal.  Some antibiotics, narcotics, and a strong will to salvage the week, though, pulled me back together & we finished the trip in grand Disney style!).
Emerson was treated like a princess at every attraction!  I’m still humming tunes from the Little Mermaid & Beauty and the Beast (my favoritesJ) & Collin and Bradley, while graciously enduring the little kid rides, also got to brave the more exciting ones.  And thanks to some folded up park maps in Bradley’s shoes (he measured just shy of the height requirement for some rides) he was able to experience them all!  Their favorites included Space Mountain, Tower of Terror, Rockin’ Roller Coaster, and The Hulk.
In all the Magic Kingdom was my least favorite – very crowded and overwhelming for both Eme and myself.  Luckily we got that one out of the way on Monday & from there every park we visited was better than the one before!  We thoroughly enjoyed walking through Epcot & Hollywood Studios was a highlight too.  Emerson met many characters & much to my delight loved them all!  We also walked through tons of gift shops, & in true Make-A-Wish style, Emerson chose something special at every one!!  I must say, though, I’m not sure which was Eme’s greater wish come true – a week at Disney World or a week with her big brothers!  She honestly adores and idolizes them both!!  I have never seen so many grins and giggles from one little girl.  She managed the week with no naps & few melt downs.  She woke up happy and ready to go every morning & finished every night with a song.  It was amazing.  It really, really was…
I just uploaded my photos & there are over 1,000!  I’ve posted a few of my early favorites & will add more in the days and weeks to come.
Words cannot express my deep & sincere gratitude to the Make-A-Wish organization.  Please know that you, together with the many people who have donated to your cause, have given us a gift that cannot be matched.  I do not know what the future holds for our family.  I do know, though, that this week together will be remembered as one of the greatest in my lifetime.  You’ve given us something that can never be replaced and can never be taken away.  Life may come and go, but the memories we made – the smiles etched into our hearts, the laughter ringing in our ears – will stay with us forever.  Thank you, thank you, thank you…

In the category of too unbelievable to be true but it is… it’s 2:00 in the afternoon and Emerson is still sleeping.  She is running a fever of 103, is flushed, and is not responding to my attempts to wake her up.  I’m not exactly sure what took over her little body last week, but a good dose of princess magic & fairy dust would be my guess.  In any case, we are back in Omaha and will likely be making a trip to the hospital this afternoon.  I’ll update again when I know more…

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Back To Reality
Submitted by Erika on Mon, 03/01/2010 - 4:06pm.
Emerson was admitted yesterday with a high white count (which would indicate she’s fighting an infection).  Her fever continues today.  At the moment it looks like a UTI, but several tests are still pending.  She’s on her second peripheral IV already & is getting broad-spectrum IV antibiotics while we wait for further identification of exactly what we’re treating.  IV placement continues to be a big struggle & I’m really hoping this one will last!
As you may know, UTIs can cross into the blood stream causing sepsis.  Therefore, quick identification and treatment is necessary – especially in immune compromised patients like Eme.  It was impossible to cath her 4 times a day while we were at the park last week.  I suspect that’s why this happened.  It’s difficult to think I may have caused this & definitely reinforces the fact that I need more permanent and on-going help with her – I just can’t do this myself.  The team suspects we’re battling the same organism Eme grows over and over again.  That’s a scary thought, as this bug is nearly completely antibiotic resistant.
They increased her dose of cortisol to hopefully ward off another adrenal crisis.  Her eyes are dark, she’s lethargic, & she’s clearly not feeling well.  I’ll update again when I know more…
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Another Admission...
Submitted by Erika on Thu, 03/04/2010 - 3:11pm.
...another diagnosis.  Ay yi yi!!!  Emerson’s hemoglobin has been dropping all week, which prompted the team to order iron studies, which returned… you guessed it – low.  That, in addition to other lab values, has lead the team to the diagnosis of chronic iron deficiency anemia.  Why not, right?!?  She’s getting a blood transfusion this afternoon & will hopefully, with a few new meds, be able to hold her blood count up on her own afterwards.  All in all it’s not a terribly distressing diagnosis & yes, it is (or should be) totally treatable.  The discouraging thing, though, is that she seems to be discharging with a new diagnosis every time she comes in.  My fear is that the ones to come won’t be so easily treated.  That, plus more meds only adds to her already overwhelming schedule.
Otherwise, little Eme has had a rough week.  She’s perked up a little today, but has been sleeping pretty consistently since Monday.  Her color is awful, her eyes are puffy, sunken, & dark.  The increase in oral cortisol wasn’t enough to touch her adrenal needs, so the team started high-dose IV cortisol Monday afternoon.  Still, though, her tired body is slow to respond.
Her UTI is resolving, but again we are left managing her Addison's.  This is her third admission in a row battling a crisis & again there is no pediatric endocrinologist in sight.  She has an out-patient appt scheduled mid-month, but that’s assuming she can actually stay well enough to be at that appointment without his help.  So, at the height of my frustration today I called our beloved pedi endo at Denver Children’s (Bradley’s doc) & talked at length to her very nice, helpful nurse.  She said she would email Dr. T and try to get Eme in as soon as possible.  I told her we could take an appointment as early as next week.  My plan, hopefully, is to travel back to Denver for that appointment then start the transfer to home.  In all, her issues lately have not been transplant related.  Now, in a sense everything is transplant related & all medical intervention has an impact on her new organs, but the things we are battling now require the involvement of other docs… and those other docs are in Denver.  I haven’t run this new plan by the team yet, but am hoping they’ll agree!
That’s all for today - I’m really hoping this transfusion will perk her up and maybe we can get out of here this weekend!  As usual, though, I never plan too far in advance.  Just extra thankful for our week last week…
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Rough Day
Submitted by Erika on Sat, 03/06/2010 - 6:19pm.
Eme is dumping like crazy.  Her normal output is roughly 500-600 mls per day & today she had over 1,000 mls in the first 8 hours alone.  Stool tests returned positive yesterday for the Norwalk type II virus.  This is the same infection she’s been battling for months.  I asked Dr. M why her body can’t rid it.  He said he recently attended a conference with the nation’s leading expert on Norwalk.  She said there is evidence to suggest this virus can live forever in an immune compromised host.  Yep… forever… the rest of her life.  Unfortunately that is extremely distressing news for Emerson on account of her Addison ’s disease.  Dumping throws her into a crisis, every time.  It’s a very vicious cycle.
I was told this team has never had a transplant patient with Addison’s.  I’ll say it again – ** she needs an endocrinologist **!!!  They did, however, finally get word back from the one they consulted & he suggested increasing her IV cortisol from 3 times a day to 4 times a day.  As of last night that seemed to be helping, but today’s events change everything.
Her peripheral IV infiltrated this morning & she required a series of shots around the site to prevent cell death under the skin.
All feeds have been stopped and she’s going down for central line placement.
Oh…. & her UTI is back with a vengeance.
Another one of those days – she won’t be going anywhere anytime soonL.  And she did so well last week.  I’m thinking we need to move to Disney World… permanently!
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Takin' Care Of Business
Submitted by Erika on Thu, 04/14/2011 - 9:44am.
Two things for today:
For those who’ve inquired about an address, the previous Omaha P.O. Box is no longer in service.  Instead, please send mail to:
Erika & Emerson White
Lied Transplant Center
987600 Nebraska Medical Center
Omaha, NE  68198-7600   

& Last, but FAR from least…
HAPPY 12th BIRTHDAY COLLIN!!
I can’t believe it’s been 12 years – feels like just yesterday I held you in my arms.  What a caring & courageous young boy you’re growing up to be.  I love you & miss you more than you could ever know! 
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Finally Something
Submitted by Erika on Sat, 05/08/2010 - 2:11pm.
First, let me back up… the pathology report on Emerson’s urine culture identified her infection as a Klebsiella Pneumoniae.  This is exactly as I expected given she’s grown this same organism over and over again.  She just can’t seem to get rid of it.  It continues to strengthen in its resistance to antibiotics, but there was a drug it grew sensitive to in the lab.  She’s on that drug (plus two others), but there’s been little to no improvement in her condition.  She is not deathly ill & certainly I’ve seen her sicker, but she continues to run fevers throughout the day, is pale with red circles under her eyes, & is generally slow moving & lethargic.  She either sits in her crib watching TV or sleeps most of the day.
I had a lengthy meeting with the infectious disease doctor (another great oneJ) on Thursday.  We discussed Emerson’s history as well as this most recent infection.  Because she’s not been improving as expected on antibiotics, he ordered additional testing including a CT scan.  The results of that test are back and show a lesion on her left transplanted kidney & numerous small cysts in her native kidneys - finally something.
I’m not sure it’s a good something, but at least we know what we’re up against.  All are now on heightened alert for a blood infection & as such, they’ve ordered daily blood cultures until we can sort this all out.  The ID doctor said he’s not sure of the ultimate “plan” at this point, but suspects it will include a minimum of 4 weeks of IV antibiotic treatment (assuming she can clear these fevers soon).  He’ll follow her daily & Nephrology & Urology will be consulted next week.  I’m not sure where this is all going, but it’s looking like a much longer than expected hospital stayL.  Welcome home to us…
Additionally, Emerson’s EBV quant came back at “mild to moderate” levels.  Her last EBV quant in March was negative.  ID will repeat the blood test next week to look for a trend.  A rising trend would be concerning.  EBV is the virus that causes mononucleosis for you & me… it causes cancer in transplanted patients.  It’s a dangerous virus in the transplant community & one the team keeps a very close eye on.
Other than that, it’s status quo around here.  Sadly we are all too familiar with this routine.  Tomorrow will mark my 4th Mother’s Day in a row in the hospital.  All things considered, though, it could be much worse… the fact that I’m still here means Eme is still fighting & that will make this the best Mother’s Day yet.  My thoughts tomorrow will be with the beautiful mothers who left Omaha without their children and with the beautiful mothers who lost their children & through their selfless decision to donate organs have given other children the gift of life.  I can’t imagine the pain & emptiness they live with every day.  To Eme’s donor mothers, thank you for sparing me that same pain… my thoughts and prayers are with you this Mother’s Day and always.
And to all the amazingly supportive mothers who've faithfully followed our journey for so long... a very Happy Mother's Day to you too!!
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Monday Morning
Submitted by Erika on Mon, 05/10/2010 - 2:09pm.
So… it’s a new week with a new team & there’s a lot to accomplish!  Emerson had a little scare yesterday morning during rounds – her heart started racing, she got very hot, a rash started moving up her legs & trunk, and her fever spiked to 104◦.  Not the Mother’s Day surprise I was hoping for!  I’m so nervous about this Klebsiella seeding in her blood.  It would be very nasty & could potentially play out a little like her e-coli infection in October of 2008 (think code blue).  I’m not sure either of us could get through that again.
A blood culture from yesterday returned positive this morning for a gram positive organism.  What??  Not Klebsiella (it’s a gram negative)?  Where is all this coming from?  And how is it even possible?  She’s on full antibiotic coverage for gram positive infections.  I just can’t wrap my head around what is going on in her little body right now.
The issues to address are varied and include the following:  1) her fevers continue, spiking to minimum 102◦ most days 2) her blood pressure is high (even on bp medication), 3) her weight is up 4 ½ pounds since admission last week.  Added to this, of course, is the CT scan which showed a lesion on her transplanted kidney & cysts in her native ones.  She is now on 4 different antibiotics running nearly all day long – still, there is little to no improvement in her condition.  She has no symptoms of a viral infection & an extensive panel of viral testing returned negative.
I talked to the urologist at length this morning.  Among other things, we discussed the question that’s been looming over head since the results of the CT scan – do we remove her native kidneys?  As you may remember, she has 4 kidneys total – 2 native & 2 transplanted.  The transplanted kidneys are the only functioning kidneys, her native ones will/should eventually shrivel up and “die”.  In the mean time, though, they do still filter blood (albeit not very effectively) & they do pass some urine into the bladder.  If, indeed, there’s an infection lurking in those kidneys it would be capable of causing UTIs & blood infections.
I’ve been less than excited at the prospect of another major surgery for Emerson & said I’d only consent if there’s positive proof this is where the infection is.  Right now the general consensus is maybe yes, maybe no.  In discussion with the Urologist this morning, though, he explained that the kidneys could be removed via two small incisions on each of her sides – they would not have to open her back up through the abdomen.  That’s encouraging!
Before any decision is made, though, there are a few more things to rule out.  An echo was done today to look for an infection in her heart (which she’s had several times before) & she’s tentatively scheduled for an intestinal biopsy Wednesday.  She’s not been dumping, which is encouraging, but the GI doc said the weight gain could be explained by fluid around her bowel wall, which could mean rejection.  There are also plans to repeat her EBV testing.
To wrap it all up, a care conference is being scheduled for tomorrow or Wednesday to include EVERYONE involved.  The GI doc this morning said there are 8 people to round up & we won’t sit down until all can be present.
That’s all for the medical update… The boys came up yesterday & took me to lunch which is the great part about being back in Denver – only 1 hour from home, not 9J.  The nurse asked me today if I miss my house… I thought about it & replied “no”.  I’ve been gone from home for so long.  It’s wonderful to be there, but I don’t miss it so much.  What I miss is my privacy.  It’s very hard living in a hospital room, especially with as much trouble as Miss Eme causes – there are people in and out of here constantly throughout the day.  I am thankful to be back, though!
Lots more to come this week…
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End Of Week #2
Submitted by Erika on Fri, 05/14/2010 - 11:16pm.
It’s getting late but I hate to keep everyone hanging… so, I’ll stick to the facts tonight.
There are no big changes with Emerson.  She’s acting okay but continues to spike fevers daily.  It’s been 2 ½ weeks now & her fevers haven’t subsided at all.  They’re just as high & just as frequent as they were when they started.
Emerson’s blood pressure remains too high.  The hepatologist started her on another medication (in addition to the one she’s been on since transplant).  The dose of that medication has been increased twice & still her pressures are high.
The plan earlier this week was to do a PET scan in hopes of identifying a pocket of infection somewhere in her body (& to get a better look at her kidneys).  Unfortunately, though, the prep for that test includes 8 hours of NO glucose.  That’s impossible for Emerson, she cannot fast that long.  The doctors contemplated running the test with only 2 hours off glucose, but the radiologist didn’t think we’d get very good results.  So… that test was cancelled.
The team then considered a targeted white blood cell scan.  That test, however, requires a nuclear agent from Poland & it’s unavailable (believe it or not) on account of the volcano in Iceland.
So… the CT scan was repeated this evening & the results will be compared to those from last week.  I’m not sure it will give us the answers we’re looking for, but for now it’s the only option available.
Emerson remains on 4 different antibiotics to treat a resistant UTI & a blood infection (yep, it grew through the meds!).  She’s been unable to maintain acceptable levels of the drugs, though, & Infectious Disease is now considering 24 hour dosing.  
In discussion with ID today I asked what they think is going on… they said she has an abscess, we just have to find it.  The likely outcome will be 6-8 weeks of antibiotics & possible needle drainage (if we can ever actually locate the infection).  Further, they said if the CT scan looks the same as it did last week they’ll recommend the removal of her native kidneys.
A foley catheter was placed for the weekend.  ID recommends 2 days on, 2 days off (to minimize the chance for infection), continuing throughout the hospitalization.  They’re hoping it will be more effective at keeping her bladder empty, thus limiting the risk of reflux to her transplanted kidneys.  The bladder button is not an option until Eme’s fevers stop.
The care conference was postponed until more results are in – we don’t have enough answers to make any decisions yet.
Hope you all have a wonderful weekend!!  I’m off to dreamlandJ…
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Results
Submitted by Erika on Sun, 05/16/2010 - 8:51am.
The CT scan from Friday showed a new pericardial effusion (fluid around the heart), cysts in Eme’s native kidneys unchanged in number & size, lesion on transplanted kidney larger & now a new lesion on the same transplanted kidney.  Her heart rate is elevated – reaching into the 180s most days – but otherwise there are no significant changes to her clinical appearance.  I have no idea what the plan is from here, but as she remains stable this weekend it will almost certainly be next week before the team makes any decisions.  I’m told the urologist & the nephrologist will play a big role from here forward.  It certainly appears that the kidneys are the culprit.  What to do… what to do…
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A New Week
Submitted by Erika on Mon, 05/17/2010 - 7:57pm.

How quickly things change... it's been a busy couple hours.  Eme is in the PICU.  More tomorrow.

 

The nephrologist carefully reviewed Eme’s CT scans this morning & has recommended the removal of her left TRANSPLANTED kidney.  He said the infection is spreading & it’s unlikely we’ll be able to treat through it.  One possible scenario is that the blood supply to that kidney has diminished & the antibiotics, therefore, are unable to reach it.  I’m told the progression of this infection in 1 short week (while on 4 different antibiotics) is impressive.  Additionally, he recommended the foley catheter stay in place as long as possible – ideally her bladder will remain empty at all times.  He also ordered another blood pressure medication, which takes her to 3, to try & bring her pressures down.  So far not much is working.
I talked to infectious disease about the possibility of starting another, stronger antibiotic.  They were very hesitant saying there are only 2 left & they, like the team in Omaha, want to save them for as long as possible.  Further, ID said the antibiotics she’s on should be more than covering her current infection.  They’ve combined several different antibiotics to deliver optimum strength treatment.  At this time they feel they’re doing all they can from a drug perspective.
And to complicate everything… Emerson started dumping today.  Her ostomy output this admission has averaged roughly 300 mls per day.  Today she had over 1,200 mls out in just 12 hours (now she's dumping 200-300 mls an hour).  And she has stopped peeing.  They’re cutting back on feeds, adding IV fluids, & giving her a bolus.  She also dropped her sats & is sitting at only 90% wide awake.  I wouldn’t be surprised if she winds up on oxygen tonight.
As usual, Eme likes to keep everyone on their toes!!  It’s a new week & with it comes a new set of complications – par for the course.  We’re waiting on one more doctor to weigh in on the CT results & if he agrees with the nephrologist’s plan of action we’ll talk to the surgeon next.  I have no idea what lies ahead there.  Of additional concern moving forward, then, is how do we keep her other transplanted kidney healthy?  She’ll need it!  It seems more important now than ever to keep her bladder empty (thereby reducing the risk of reflux to her kidney).  Will cathing be enough?  The stakes are high.
Lots more to talk about, lots more to report – stay tuned…
The good news is that Emerson appears oblivious to all that's going on in her little body.  She continues to play, ask for Lello, & scream "Mom" all day (yes... my head is pounding!!).  Good 'ole Eme - I think her threshold for feeling lousy is pretty high!
A million thanks for all the birthday wishesJ.  It’s not so much fun to celebrate getting old, but I suppose it’s much better than the alternative!
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A Recap
Submitted by Erika on Tue, 05/18/2010 - 7:01pm.
Emerson crashed last night which prompted her transfer to the PICU.  It happened soooo fast… out of nowhere she laid down, turned dusky grey in color & cold to the touch, her lips went pale, her eyes rolled back in her head, her heart rate dropped from 160 to 60 & her blood pressure started to fall.  They had just finished delivering a 10 per kilo fluid bolus.  They quickly set up an additional 20 per kilo bolus & essentially pushed it in.  As you might expect it was a zoo… at one point I counted 12 people in her little room.  Flight for Life came, PICU, nurses, docs – the crash cart was outside her door.  Luckily Eme responded to the fluids, but there was fear that once she worked through them it would happen again.  On top of that, her white count jumped significantly.  So, all together it earned her a transfer downstairs.
She had a relatively uneventful night (thank goodness), but has had a rough day today.  She’s still spiking fevers, her blood pressure again is high, & she continues to dump even off feeds.  She’s had nothing through her gut for 24 hours & is on track to put out 2,000 mls today!  That’s huge!  I’ve actually never seem Eme do this & it’s concerning.  They sent stool cultures last night (which are so far all negative) & scoped her this afternoon.  Biopsy results should be back tomorrow.  She starts TPN tonight.
Additionally, & most concerning to me, was her behavior today.  Emerson is a happy little 3 year old who’s grown up in a hospital.  She pushes her own meds, puts on her own band aids, helps the respiratory tech with her treatments… she plays nicely in her crib, likes to color, & loves to watch TV.  NOT today.  She’s been thrashing, screaming, hitting, ripping her hair out, & pulling at her lines all day.  I had her in my lap for most of it & could barely hold on to her at times.  They started Ativan & Valium and have already increased her Valium dose once.  There’s also been talk of starting a sedation drip.  This is not my Emerson.  I don’t know this child.  The only other time I’ve seen her do this was the night before the code.  Mind you, I don’t think she’s headed there again but I’m concerned as to what’s going on in her little body.  Something is very wrong.
Which takes me to the next big issue… what to do with this kidney??  The final doc here weighed in & all are in agreement that it must be removed.  Today, though, they attempted to contact the team in Omaha.  Dr. M (the attending here this week whom I adore & am soooo thankful for) called Dr. M in Omaha this morning & left him her personal cell phone number.  As of late this afternoon he still hadn’t called her back?!?!?!?  Honestly??  I know there are other things going on, but this has to be addressed & SOON.  She’s getting worse, the infection is spreading, & she’s at serious risk for sepsis as long as this kidney remains in her & infected.  She’s been consistently febrile for 3 full weeks now.  Someone needs to make a decision as to what we’re going to do & more importantly who’s going to do it.  The game of phone tag does not bode well for her right now.
All in all I'm drained.  To the people in the PICU whom I overheard suggesting we “get her a roll of duct tape”, I’m sorry… no, she’s not a spoiled little girl, she’s sick & something is wrong.  And to the nurses who made it a deliberate point to close her door & roll their eyes in the process, I understand the PICU is normally a quiet environment.  Trust that I was doing everything I could to calm her down.  I tried literally everything.  And finally to our wonderful nurse today who endured it all with a giant dose of understanding, thank you.
It was a very frustrating day… her kidney is infected beyond repair & threatening other functions and her bowel is not healthy.  We really, really, really need a plan!
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Another One... & It's A Long One
Submitted by Erika on Wed, 05/19/2010 - 9:12pm.
It was another extremely frustrating day (for different reasons).  I want to preface it all by reminding everyone that this is my personal recount of this crazy roller coaster we’re on – it just happens to be open for the public to read.  Having said that, I’ve always been & will always be brutally honest about what is happening & more importantly how I’m feeling about it all.  Sometimes frustration gets the better of me & I over react.  If that’s how I’m feeling that day, though, that’s what I’ll say.  If I sugar coat every situation or write through rose colored glasses I’d be cheating you & I’d be cheating myself.  That is not this journey.  The truth is this is tuff… really, really tuff.  Some days are better than others, & the bad ones are really, really bad.  If you’re up for it, keep reading.  If not, you might want to stop here…
On that note, I first want to follow-up on the comments from the professionals/nurses in the PICU yesterday.  Several people approached me today with genuine shock & concern (sometimes I forget how many people read this blogJ).  I can tell you that it’s been addressed with all the appropriate personnel here.  I’m confident the comments weren’t meant to be heard… but they were.  I’m also confident they weren’t meant to be hurtful… but, again, they were.  That said I had no intent to throw anyone under the bus.  My experience with the nursing staff at this hospital, over a 3+ year working relationship, has been outstanding.  They are exemplary professionals & I so appreciate all they’ve done for us.  I feel privileged to call some of them friends & fortunate to have all of them in our corner.  So… in pointing out the negative comments of a few, I wanted to be sure & also acknowledge my appreciation for the vast many!
On to the day… the intestinal biopsies look encouraging – there doesn’t appear to be any evidence of rejection at this time.  Phew!  The most likely culprit is a virus, probably adeno - a potentially nasty one.  Eme's output yesterday OFF feeds was as high as the day before ON feeds & today it’s UP!!  That’s impressive (not in a good way unfortunately).  We’re still waiting on viral studies to confirm it all.
In other news, EVERYONE (it seems) talked to Omaha today.  Surprise, surprise – they want her back!!  They said the major artery carrying blood supply to her intestines & liver is less than a centimeter away from the one delivering blood to her kidney (Denver tells me they know that btw).  If there are any complications in surgery it could mean the loss of all her transplanted organs & that, of course, would be catastrophic.  For that reason, they want her back.  Okay… makes sense.  They also said that after reviewing the scans (which they haven’t done yet) they will likely want to do further testing of their own.  They “won’t take her into this surgery lightly”.  Obviously (honestly)… this decision has not been reached lightly.  We’ve been here for nearly 3 weeks scanning, talking, watching, ruling everything else out, etc. etc.  Denver, also, is a world class facility.  The docs here are wonderful - they DO kidney transplants & they MANAGE kidney transplants (lots of them).  This decision was made based on the expertise of a kidney team who has seen similar scans many times before & can pretty confidently predict the outcome.  I really don’t want to transfer to Omaha to sit there for 3 more weeks while they scan, talk, watch, & rule everything else out all over again.
And further, if Omaha doesn’t agree with removal?  They’ll take her back, evaluate, make recommendations, & send her back to Denver for treatment… seriously?!?!?!?  If they don’t trust anyone else to care for her why did they ever send her home in the first place??
What’s more, I know Emerson & I can pretty confidently say we’re working on borrowed time right now.  She has a line in.  She’s already had 1 infection.  It’s not “if”, but “when” & “what” the next infection will be.  If it’s a bad one it could be very bad news.  Sepsis/infection is the number one cause of death in these kids post-transplant & Eme is very, very susceptible… It does her no service to drag our feet on this.
I was told today I need to choose who I want caring for my daughter – Denver or Omaha.  It’s one or the other, “not both”.  How does a parent make that decision??  I want what’s best for Emerson.  I want her to have a life in Colorado with her family, but moreover I want her to have a life period.  Is Omaha really the only facility that can care for her?  I don’t know… I don’t think so.  I’ve worked with the team in Denver for a long time & I respect them immensely.  They’re really good at what they do.  Certainly, though, I also have a lot of respect for the team in Omaha – they saved Eme’s life once & gave her life twice.  What they’ve done in the past 2 years is nothing short of miraculous in my eyes.  I trust them implicitly with Emerson’s life.  But (& it’s a BIG but)… we LIVE in Denver.  Emerson is complicated.  The reality is she’ll probably be in and out of the hospital forever – how do we LIVE here and receive care THERE?
In working through everything today, my thoughts keep returning to my overall goal – quality over quantity.  If we return to Omaha & they do the surgery there, I’ll very likely miss another summer with my boys & Eme will very likely miss another opportunity to splash in the lake & play in the sand.  If we stay here & the surgery is scheduled for this weekend we have a shot at being out of here in a month.  I don’t know… Denver tells me they are 100% confident that they can do this.  I trust them & I believe them.  Omaha, on the other hand, says they don’t want anyone else in her abdomen.  They know her best, no doubt about it.  They know what her insides look like, no question at all.  Does that mean no one else can successfully take her to surgery??  I honestly just don’t know…  This sucks!
If this were intestine related we'd be on a plane tomorrow.  Omaha is the very best at intestines.  It's not, though, it's kidney related & they do lots of kidneys here... in Denver.
In the end, we’ll have to see what transpires over the next few days.  Everyone is expecting them to be eventful & I sincerely hope they are.  Some decisions need to be made & soon, Emerson is not improving.
Thanks for reading through today's novel…
Oh, & her mental status was improved this afternoon - kind of a long story so I’ll save it for another postJ.
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The Decision
Submitted by Erika on Thu, 05/20/2010 - 9:17pm.
I asked to be removed from the decision… it is one that should be made between medical professionals.  Not by a mother.  I’ve had many frank conversations with the doctors in Denver & talked to Omaha twice today.  I believe everyone involved knows my concerns.  I said we would go to Omaha for the surgery but only if there was agreement beforehand to remove the kidney.  In the end I don’t know who should physically do this surgery, but I do know the team in Denver is more than qualified to make the decision that it needs to come out.
The doctors talked at length with Omaha today.  They’re in agreement with the need to remove Eme’s kidney & they want to do it.  So…
We’re in Nebraska.  We flew out this evening with Flight for Life & arrived just a short time ago.  She’s not looking so hot today… she hasn’t since she crashed Monday night.  She was admitted into the PICU.  Hoping for a plan tomorrow!
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Saturday
Submitted by Erika on Sat, 05/22/2010 - 10:45am.
So, we’ve settled into the new PICU here in Omaha – totally remodeled roomsJ.  My little red recliner has met an uncertain fate but has been replaced with a new & improved blue recliner that converts to a flat surface for sleeping.  Nice, but I do kind of miss my old, familiar friend.  There are frogs & flowers painted on the glass windows, flat screen TVs, doors that close, & curtains for privacy – I especially like that new feature!  Otherwise that which makes this hospital so great hasn’t changed one bit… it’s nice to be back amongst familiar faces & has been good to catch up with all our wonderful nurse friends here.
Emerson continues to dump from her ostomy.  Her output yesterday, off feeds, was 2,500 mls or 2 ½ liters!  Wow… I’ve never seen her do this before.  She tested positive for rotavirus, so I expect that’s to blame.  It looks like she picked up a nasty one this time!  As a result of all her fluid losses, she’s been requiring daily replacements of potassium & albumin.  She remains on TPN & they’re watching her electrolytes closely.
She also continues to battle varied blood pressures – some high, some low.  And her temps have swung in the other direction now with daily dips near 95◦.  Her white count is down though (that’s good)!  In all, both her high temps & her white count improved about 4 days after the bladder catheter was placed.  Obviously this kidney likes an empty bladder!
Otherwise, Emerson is in good spirits today.  She’s sitting in her crib watching a princess movie & asking for her brothers.  They have a good handle on her nutrition and replacements here & overall she’s feeling better.
As for the medical “plan”… my mother always said, “if you don’t have anything nice to say, don’t say anything at all” so I’ll leave it at that.  She taught me well!  I’m really hoping for some more direction next week, but as of now everything is up in the air.  It would appear that what we came here for may or may not have ever been the “plan”.  Grrrrrrrr……
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Emerson Is Sharing...
Submitted by Erika on Mon, 05/24/2010 - 2:47pm.
… I wound up with rotavirus this weekend & let me tell you – not fun!  I spent most of yesterday curled up in my Lied Center Room.  Miserable!  I was able to keep some mashed potatoes in this afternoon, though, so I hope that means I’m on the mend.  Sorry Eme, but no kisses next time you’re sick!
As for everything else, the doctor on Friday morning signed out at noon & the weekend doctors never do much.  So, today was the first day to really discuss what’s going on with someone who might actually do something.  Luckily it’s Dr. BJ.  As I expected, removing a transplanted kidney is a big deal for Emerson & something everyone wants to avoid at all costs.  Dr. B is reviewing the CT scans today.  He said, though, that nothing is simple with Eme – she’s had a complicated course & odds are there’s more yet to come.  Yes, he could get her though surgery, but with all the drugs she’s on (several of which are harmful to the kidneys) and the uncertain path ahead, she’ll need them both!
Of particular interest is that roughly 4-5 days after the Denver team placed a bladder catheter Eme’s fevers subsided and her white count improved.  Her kidney likes an empty bladder.  As such there’s much discussion about a vesicostomy (Dr. B said it’s at the top of the list).  “A vesicostomy is an opening in the abdomen that allows urine to drain continuously from the bladder. The opening is made by making a small incision through the skin and into the bladder during a surgical operation. A small part of the wall of the bladder is turned inside out and sewn to the abdomen.”  She would drain continuously into a diaper for as long as the vesicostomy remains in place.  It is reversible, but I’m told her condition is unlikely to ever improve.  The hope is that continual drainage of the bladder may give her left kidney some time to rehabilitate & also prevent future damage/infection to them both.
And, to add one more opinion to the mix… infectious disease thinks she may have PTLD (post-transplant lymphoproliferative disorder) aka cancer.  In a nutshell, they think the cysts in Eme’s native kidneys could be cancerous.  PTLD is caused by the Epstein Barr virus (EBV).  Emerson has always been EBV negative… until this admission.  She tested positive for EBV in Denver with a mild to moderate quant.  Ten days later her quant had quadrupled.  They repeated the test here & if her quant is continuing to increase at a rapid rate they’ll consult oncology.
Lots going on… I told Dr. B this morning if they don’t want to remove the kidney they have to do something.  He replied, “Oh I’ll do something all right… I’ll get you in touch with a good realtor & help you find a new apartment here!!”  That earned him a good punch in the arm – NOT what I had in mind!!  In all seriousness, though, he recognizes the severity of this problem & the impact it’s having on our quality of life.  I’m hopeful something will be done this trip… I’d like to think we didn’t fly out here for nothing!
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Surgery
Submitted by Erika on Fri, 05/28/2010 - 2:12pm.
I took a quick trip home this week for Collin’s continuation ceremony/“graduation” from 5th grade.  He’s been convinced for over a year that I wouldn’t be there & I’ve been promising him for over a year that I would be – a promise I was bound & determined to keep!  Add to that a little side trip to the ER for myself and it’s been a hectic couple days.  I’m recovering, so I won’t labor too long on all that but let’s just say this rotavirus is still hanging on (and on… and on…).
The repeat CT scan of Emerson’s kidneys showed no progression of the lesions.  As such, there is continued hope we can save this organ if we keep her bladder empty (thereby limiting/eliminating reflux to her transplanted kidneys).  It was decided a “traditional” vesicostomy was too dangerous an operation for Eme due to the placement of her transplanted ureters.  Instead, the team has decided to place a pubic catheter (a tube placed through the lower abdomen & into the bladder), stretch the hole over the next 4-6 weeks & allow the skin to form a fistula, at which time the catheter will be removed.  It will essentially look & operate identical to a vesicostomy, but is achieved in a slightly different/”non-traditional” way.  Of additional distinction is that this procedure is not reversible.  I was concerned at first as I don’t want to set up a situation that requires Eme be in diapers for the rest of her life.  Growing up is hard enough & she’ll already have more than her fair share of strikes against her.  We’re blessed that she isn’t mentally impaired & as such she will know she’s different.  In the end it was decided we can dress the fistula with a wafer and bag (much like her ostomy).  This will mean she can simply empty the bag periodically & will not require continual drainage into a diaper.  Good newsJ!  I’m sitting with her in pre-op as I write, waiting for her to wheel back to surgery.  She’s watching Arthur… a little unsure, but mostly completely unaware of what the next several hours will bring.  An IV cocktail, a nice little nap, & one more permanent hole – one that will hopefully allow her more quality time at home!
Her EBV levels are not expected back until next Tuesday.  I was hoping to have more information on the possible PTLD/cancer front before heading into the long weekend, but it looks like we’ll have to sweat it out for a few more days.
Emerson has also tested positive for the BK virus.  It’s all new to me, but I’m told this virus can be especially problematic to kidney transplant recipients (of course) & is associated with a high risk of rejection/organ loss.  Once you have it you carry it for life.  Her levels are low at this time but the team will keep a close eye on it going forward.  Those pesky kidneys… honestly!!
We’ve been slowly re-introducing intestinal feeds, but Emerson is stuck at a rate of 10 mls/hr (end goal is 75).  We tried to go to 15, but her output increased significantly.  So, we’ll back her down to 10 for the weekend & try to inch up again next week.  Slow & steady wins the race… or so they say!
If all goes as planned (not that it ever does), I’m hoping we can return to Colorado in the next 2-3 weeks.  Goodness knows I know better than to look that far ahead though.  One day at a time…
Happy Memorial Day Weekend!!  May the sun be shining, the grill be firing, & those you love most be close by – pause for just a moment & soak it all in!!

 

She's gone back.  They're doing several things & I'm told the surgery should last 3-4 hours.  I'll post a quick "all's well" later tonight once she's made it back to her room...

 

9pm:  She's out & awake.  I talked to the doctor for a while & will pass on more info this weekend.  Everything went well...

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"We're Trying To Save Her Grafts"
Submitted by Erika on Sun, 05/30/2010 - 5:04pm.
grafts = transplanted organs...
That’s the official word.  The official plan?  Not so clear.  I talked to the surgeon at length Friday (very likeable guy) & am beginning to think this is something he & Dr. B thought up over drinks one afternoon.  The procedure, much like Emerson herself, is a first.  Who knows, maybe it’ll have an official name once we’re through with it all (the “Eme”J??)!
Phase I was completed Friday & there are 2-3 more phases to go (or so they “think”).  I mistakenly assumed the rest could be managed outpatient.  “Oh no”… each phase, roughly 2-4 weeks apart, will require another surgery under general anesthesia.  Darn…
Add that all up &, you guessed it – we’re going to be here a while.  Dr. B said to plan on another month here now, go to the beach for a few weeks after the next surgery, then come back for #3.  It’s beginning to look like another summer spent in hot, humid Omaha… exactly as I feared when we got on the plane.  I really, really, really hope we’re back in Colorado to start the new school year.  Scratch that, I have to be there – not sure how I’m going to orchestrate it, but I’ll have to find a way.
Now to break this latest news to the boys - I’m getting quite accustomed to letting them down & it’s a task that grows harder and harder each time.  Everyone says “I don’t know how you do it” & I’m beginning to wonder the same.  The opportunity cost of this journey is high.  I’ve missed so, so much.  As hard as it is, though, I try not to dwell on it – if I did, I think I’d pack it all in today… and we’ve come way too far for that… Emerson’s come way too far for that!  I continue to believe we’re close – so very close to giving her that “quality” of life she so deserves.  I have to.  Maybe one day this journey will knock me down for the count, but for now I keep getting up… & the fight continues…
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The Bad & The Ugly
Submitted by Erika on Mon, 05/31/2010 - 5:21pm.
Emerson is fine (relatively speaking), this one’s about me…
Remember when I said this journey is really, really tuff?  I think I’ve finally reached my breaking point!!  Today marks one month into this admission – 4 weeks ago today Eme was admitted in Denver for “a day or two”… 4 weeks later we’re sitting in Omaha facing another summer away from the family, another summer in the hospital.  And to add insult to injury, 4 weeks & 2 days ago we “moved home”.
Let me give you a glimpse into my days spent here:
The alarm sounds & I hit snooze – only once, because I don’t want to miss pre-rounds.  I roll out of bed, throw my hair back, look at my makeup & decide it’s not worth the trouble, open the little closet door to find 5 shirts, think back to what I wore yesterday & make sure to pick something different.  I find my way out the door & down the hall to a set of 4 elevators… push “down” & the day officially begins.
I pop into the cafeteria for a very large diet coke (my morning drug of choice), find my way to another set of elevators, push “up”, & travel to the 6th floor.  I arrive in Eme’s room to find her sitting in her crib, knee deep in toys – dolls, plastic food, sticker books, dollhouse figurines & furniture…  Mickey Mouse Playhouse is on TV.  I open the blinds to let some light in, disconnect her vesicostomy bag from the side rail, untangle her tubes, clean up all the toys, and lift her out of the crib.
We put her babies to bed, we wake them up, we color “apple” (Strawberry Shortcake), she feeds me plastic spaghetti (over and over again), we sit mommy & daddy at the table to eat, they go to bed, they eat again, they go to bed…  Her pumps beep, I restore them, she gets tangled in her tubes, I unwrap her.  I eat more plastic spaghetti.  Now Eme’s hungry, but she doesn’t want plastic food.  “Baby mo eat”, “baby mo eat”, “baby mo eat”.  I find my way to the nurse station & grab a handful of graham crackers for the day.  They must be square & they cannot be broken.  She eats one, then “baby mo eat” again.
I sneak in a minute on my computer.  First I check my emails, then I check in on all our friends via their blog sites, then I check to see if anyone has posted in Eme’s guestbook, then a quick glance at Facebook & she needs my attention again.  Mickey Mouse is still on TV.  I keep my peripheral vision squarely focused on the clock – 12:00 is lunch time & I get 10 minutes away… long enough to walk to the cafeteria, order my food, pay, then return to Eme’s room to eat.
I put Emerson back in the crib with her toys.  She screams.  I leave for 10 minutes, return with my lunch, & she screams some more… “baby mo eat”, “baby mo eat”.  I tell her she has to wait a minute while Mommy eats lunch.  She starts throwing her toys out of the crib onto the hard tiled floor below.  At least half of them break in two – a project for later… reassembling her toys.  Mickey Mouse is still on TV.
By now I start getting funny looks from passerbys outside the room.  Yep – she’s screaming.  Yep – she’s throwing her toys out of the crib.  Yep – I’m doing nothing about it.  I’m sitting on the couch & ignoring it while I eat my lunch.  Still, though, I feel like the world’s worst mother.
I check our friends’ blog sites – no updates.  Darn…  After 30 minutes of disapproving glares I pick up all the toys, disconnect Eme’s vesicostomy bag from the crib side rail, untangle her tubes, & lift her out.  It’s only 12:45 & we have at least 9 hours to go.  More plastic spaghetti, more stickers, more baby dolls, & if I’m lucky a break from Mickey Mouse… Elmo maybe??  Did I mention there’s a dead bird outside our window?
The day comes to an end & I’ve had virtually zero adult conversation, can recite all the words to Mickey Mouse Clubhouse, Elmo’s Springtime Fun, & Strawberry Shortcake’s Berry Best Princess.  I’ve gone through my computer “routine” at least a dozen times, and have eaten my fair share of plastic food for one lifetime.  I’ve somehow survived one more day of cafeteria food (only slightly better than the plastic variety), and I’m oddly exhausted though not tired at all.  I saunter back to my Lied room, reach for the bottle of Advil, enjoy a few short minutes of adult TV, then turn off the lights & prepare to do it all over again the next day.
This is what I’ve learned about chronically ill children – they live in hospitals.  They don’t come for a few days then go home (like the rest of the world).  Nope, they live here.  Eme’s feeling better, for which I’m thankful, but she still needs to be here.  She’s not on full feeds, she requires IV meds & TPN, her blood pressure needs to be monitored.  She’s still recovering from surgery & now is preparing to undergo another one.  For today (& tomorrow & the day after that), though, she’s a busy little 3 ½ year old & she lives in the hospital.  And so, unfortunately, do I.
Yes, I need to step away more often – but I feel so negligent leaving her by herself.  There are so many parents in this program that seemingly abandon their children.  They almost never show up.  I don’t want to be put in that category.  I know, I know… I never would be, but still I feel judged.  Constantly.  My days here are spent under a microscope.  Every decision I make is looked upon, every action observed.  And it doesn’t help to close the door.  The door has a giant WINDOW!  How much time do I spend on the computer?  How much time do I spend playing with Emerson?  How much time do I spend resting?  It’s all out there for everyone to see & judge.  And that’s how it feels…  Maybe that’s not how it’s intended to feel, but that’s how it does feel.  I challenge just one of those passerbys to live this life for one day!
So, I sit here feeling sorry for myself.  This life sucks!  Then I check our friends’ blog sites again & come upon a new entry from a father who laid his little girl to rest this weekend.  It was a eulogy to his beautiful little girl with the most beautiful brown eyes you’ve ever seen.  Their journey ended here.  Their little girl will never again put her babies to bed, cook plastic spaghetti, or watch Mickey Mouse Clubhouse.  They will never again hear her scream, or ask for a graham cracker… her pumps will never beep, her tubes will never tangle.  And in that moment, with tears welling in my eyes, I feel awful.  I know they’d give anything to live this life.  They’d trade places with me in a heartbeat.  And in that moment I know I’m the lucky one.  I’m so blessed to get to live this life.  It still sucks, but the only thing worse than having to do it, is not having to do it.  So, I’ll take it.  Another helping of plastic spaghetti, Strawberry Shortcake, take out tonight (thanks to our fav PICU nurse – woo hoo!), 3 Advil...
and tomorrow starts another day…
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Sniff, Sniff
Submitted by Erika on Wed, 06/02/2010 - 9:11am.
I have the best “friends” in the whole world!!  Thank you so much for all your beautiful, heartfelt messages.  Your words are humbling & so sincere.
I’m continually amazed by the number of people we’ve touched on this journey.  Again you all inspire me to continue this journal, and to find new ways to reach more people.  Maybe that’s what this is all about.  Maybe this is the “good” that is to come from it all.  If, by telling our story, I can somehow encourage others to better appreciate life & those around them then maybe, just maybe I’ve found some value in it all.  Thank you for helping me see that…
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Small Change Of Plan
Submitted by Erika on Mon, 06/14/2010 - 3:00pm.
Emerson’s meds came this morning, but rather than discharge today & re-admit Wednesday they were able to reschedule her surgery for tomorrow morning.  I’m thankful, as it’s a lot of work to discharge & admit – she’s on loads of meds & we are pretty settled here at the moment… lots to move!
Dr. G is on service this week & she said Eme will require at least 2 more surgeries before they’ll be able to pull her bladder up through the hole & stitch it to her skin.  I was really hoping they could do that final surgery after the next one as each additional surgery is 3-4 more weeks here.  Further, Dr. G was less than enthusiastic about us leaving Omaha between surgeries.  I think she’ll ultimately let us go but is concerned about who would care for Eme in the event of a surgical complication (i.e., the tube is pulled out).  New week = new doctor = new concerns/discussions.  We have complete faith in Dr. G, though, & know she’ll make the very best decisions for Emerson.  She did Eme’s first transplant!
I’ll update again tomorrow after surgery…
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Say It Isn't So
Submitted by Erika on Tue, 06/15/2010 - 8:32am.
Temp 39.2 (102.6), blood pressure 65/34 (very low), surgery cancelled.  So close…
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Blood Infection
Submitted by Erika on Wed, 06/16/2010 - 10:30am.
Gram negative rods (the usual)… probably her klebsiella.  Urine cultures are still pending.  Eme was transferred to the PICU last night for observation.  Swift action from the team here appears to have skirted a potential crisis.  No fevers over night – yeah!  Surgery rescheduled for tomorrow afternoon (assuming she can stay fever free until then).  Several weeks of IV antibiotics & REMOVE THE LINE!!  Put in a new line 2 weeks later for the next surgery.  Klebsiella again??  It’s a vicious cycle… will it ever end?
We’ve been on this roller coaster for a very long time… I’m ready to get off, even if just for a short while.
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Another Infection!
Submitted by Erika on Fri, 06/18/2010 - 11:45am.
Well… now Eme has a UTI.  Her urine is growing the ever present Klebsiella, although her blood (at this time) appears to be growing something different.  Go figure.  It looks like a pseudomonas, which she has also grown several times before.
** UPDATE ** :  The blood culture is back & (surprise, surprise) it IS Klebsiella... makes a lot more sense.
Emerson had her dilation surgery yesterday which went well.  They were able to upsize her catheter from a 10 to a 14.  She’ll need at least one more dilation before they’re able to do the final, more complicated surgery of pulling her bladder through the hole & stitching it to her skin.  This will create a permanent stoma for urine drainage.  Eme’s disease has moved into her bladder & this is necessary as she’s now unable to pass urine on her own.
She’ll require a minimum of 2 weeks of IV antibiotics for the infections she’s currently brewing.  I’m not sure whether I can manage that outpatient or if it will mean 2 more weeks here.  It will largely depend on how many antibiotics she’ll require & how often they’ll be administered.  We’re still waiting on final sensitivities to determine those two variables.
Even if I’m able to administer the drugs outpatient, though, we’ll not be able to leave Omaha until treatment is completed & her central line is pulled.  She cannot travel to Michigan with a central line.  The next dilation was planned for 3 weeks from now, which wouldn’t give us a chance to leave.  So, I’ve asked the team to push it back to 4 weeks from now.  Hopefully then we’ll at least get 4th of July on the beachJ!
In my mind I’ve planned it perfectly – 4 weeks to the next dilation, 3-4 weeks from then to the final surgery, & home for the start of the school year.  Dr. G was very unwilling to indulge me on this “perfect” plan though.  As usual, she said “one step at a time”.  She will not predict what the next few months might bring & is not willing to assure me we’ll be home by Labor Day.  It’s really, really hard not being able to plan anything.  It’s a job for everyone here but this is my LIFE.  I really need to be home for the start of the school year & it would be nice to know the team recognizes that & is proceeding with that in mind.  I know better than anyone that plans change.  Still, though, it would be very helpful to have a “plan”, as tentative as it may be.
That’s it for us… another weekend in the hospital.  Happy Father’s Day to all the wonderful Dads who read this blog.  Here’s hoping your day is spent surrounded by those you love mostJ!
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Klebsiella
Submitted by Erika on Sat, 06/19/2010 - 9:00am.
Blood cultures from yesterday are still positive for Klebsiella.  Eme’s been on IV antibiotics 5 days now & the infection should be clearing – it is not.  Final sensitivities on the bug show we are officially down to one susceptible antibiotic.  Only one…  They’re trying to save it for as long as possible & as such they’re attempting to treat this infection with a drug that tested only “intermediate” in its efficacy.  They’ve increased infusion time hoping that prolonged exposure to this drug will eventually kill the bug.  So far it doesn’t appear to be working.  Emerson was not acting herself yesterday, so I can’t say I’m totally surprised.  We all knew this Klebsiella was going to cause problems… I sure wish we could isolate its source.
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Infection
Submitted by Erika on Sun, 06/20/2010 - 4:52pm.
Repeat blood cultures from this morning are still positive.  Really, really hoping for a better plan tomorrow…
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Care Conference
Submitted by Erika on Fri, 06/25/2010 - 7:07pm.
I had a wonderful visit from a great friend & her two young girls this week.  They drove in from Colorado & stayed 3 days – a much needed distraction for me!!  It was soooo nice having a reason to get out of here every day.  I can’t say I’m feeling rested, but my spirits are definitely upJ!
A care conference was arranged for this morning with the chief transplant surgeon.  The one big advantage of talking to him is that his word is final - no need to get consensus from anyone else!  He’s not always easy to talk to, but I really feel like he heard me today & I really appreciated the opportunity to have a private audience with him (without the hoards of other people who accompany him at rounds).
In all, I had 2 main objectives for the meeting – 1) we need a plan & 2) we need a time line.  Additionally, I need a voice.  Emerson’s been on 3 strong IV antibiotics running 24 hours a day for weeks now & yesterday’s blood cultures have AGAIN returned positive.  This infection is proving to be stubborn & very difficult to treat.  We knew this day would come…  At the moment she’s feeling okay & that’s encouraging.  At the rate at which this infection is strengthening, though, it’s only a matter of time before that changes.  She needs to clear this bug!
The first topic of discussion was Eme’s left transplanted kidney – biopsy vs. removal vs. none of the above.  Dr. L said there have been significant changes to her left transplanted kidney and both her native kidneys.  If you’re going to consider removal, you have to consider removing all 3.  He said that’s not in Emerson’s best interest & would most likely put her on dialysis for the rest of her life.  Further he said biopsy is risky with a low probability for definitive answers.  Instead he considers it best to treat this as a deep-seated kidney infection with a prolonged course of IV antibiotic treatment (4-6+ weeks).  Additionally, he said the most important thing we can do moving forward is to keep Eme’s bladder “decompressed” thereby limiting future damage (reflux) to both kidneys.  The best way to achieve that is with a vesicostomy.  I asked “what if this…, what if that…” & Dr. L said he doesn’t like to make decisions based on what ifs.  In his exact words, “Emerson has no right being here, if I’d predicted or assumed her course she would have died 10 times already”.  He feels this is the best plan for her until the facts change.  Is it impossible to clear/& or stop the progression of this kidney infection with antibiotics?  No one knows for sure.  Given what we do know, though, he’s outlined the best course for Emerson & (for now)… I AGREE.
The second topic of discussion was the vesicostomy.  Dr. L said he wants to continue with the dilations until her bladder grows up through the hole & her body forms a natural fistula.  At that time the tube would be removed (& until that time Eme would be at continued high risk for UTIs… remember nasty bugs love plastic).  I asked how long that process would take & he said he didn’t know, “we have to be patient”.  I was unwilling to accept that & expressed my need for a completion date.  We cannot be here indefinitely again.  I asked for one more dilation (scheduled for mid July), then one final operation to surgically create a stoma.  At that point it would be DONE.  I told Dr. L he could have Eme for the summer - I’ve already resigned to another one apart from the boys.  We have to be home, though, for the start of the school year.  I told him that 2 ½ years ago I left my boys hoping they would someday come to understand I’d have done the same for them.  2 ½ years later, though, it’s starting to feel like I’m trading 1 life for 2 others.  Bottom line: we need a commitment to either be completed with this vesicostomy and out-patient or be transferred back to Denver Children’s Hospital by Labor Day.  I felt like he heard & really understood that (thank you!!).  He considered the surgical creation of a stoma &… HE AGREED!
In all I think it was a successful meeting.  I concur with the plan moving forward & am coming to terms with the knowledge that we may not be able to fix everything for Emerson.  I believe we’re making the best decisions we can.  Will they be the right decisions?  Only time will tell.  Will this infection, indeed, prove to be the hurdle she can’t jump.  Again, only time will tell.  What I do know, though, is my Emerson is one tough cookie & her spirit is strong.  By all accounts she shouldn’t be here, but she is… every day is a gift.  And although I want to strangle her myself most of them (think very, very stubborn 3 year old temper tantrumsJ), in the end I have to believe I’ve done everything humanly possible to give her a chance to fight.  It will be over when Eme says it's time, her body will tell us when she's had enough.  All this fretting over her kidneys and it may well be the flu she battles last.  Only God knows the ending to this story...
So, it looks like we’ll be in Omaha for the remainder of the summer & Eme will remain in-patient for all of it - a 4 month admission… and to think it started as a 2 or 3 day stay for “observation”.  As Dr. L pointed out this morning, though, “Emerson doesn’t get a little sick”.  Guess she also doesn’t get short admissions!  Suppose I should know that by now…
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Another Line
Submitted by Erika on Sun, 06/27/2010 - 10:10am.
It was a long night & I’m waiting on Emerson to come back from surgery before I bury my head in the pillow for a few hours.  I’m totally exhausted.  Sorry to ramble, but here goes:
As you know we’ve been unable to clear these infections from Emerson’s little body – blood & bladder.  After Friday’s cultures returned positive again, the team decided to pull her central line & manage on a peripheral IV through the weekend (wishful thinking) thereby giving her blood stream a ‘break’ from the deep-seated plastic catheter.  The hope was this would give the antibiotics a chance to take over & kill these bugs once and for all.  There in starts the nightmare that was this weekend…
Long story short, after several bedside attempts they placed a peripheral IV in her chest Friday afternoon.  That one miraculously made it through until Saturday morning when it infiltrated.  An anesthesiologist was then able to get a small one, which was supposed to last only a few hours until she could get in for another central line.  They turned off her feeds in preparation for surgery.  The day crept along & the only word from the OR was they were ‘busy’ & didn’t know when they could get her in.  Fast forward to midnight… Eme had been off feeds for 12 hours & managing on a small, tentative peripheral IV for dextrose, meds, & 3 antibiotics.  That IV blew up.  No big surprise.  The team in the OR pulled an anesthesiologist from a case & sent him upstairs to start yet another IV on Emerson.  He tried 5 times & NOTHING.  There was NOTHING.  At this point I’m fuming.  I’d honestly rather them remove her kidney then put her through another peripheral IV attempt.  It takes 4 people to hold her down & one person to poke, poke, poke.  And to be clear - these aren't pokes in her arms & hands.  They're pokes in her knees, abdomen, chest, under her nipples... any place they see a vein (& even some places they don't - that's called a 'blind stick').  It’s torture, no other way to describe it.
Emerson was put back on intestinal feeds at 1AM for glucose needs.  They were shut off at 4AM in anticipation of a 10AM surgery.  She went 6 hours with NO glucose, NO meds, NOTHING.  She was miraculously able to maintain her blood sugars, but went hypothermic with body temps dropping to 34-35 degrees.  This was her body’s way of conserving energy for other important functions.  The past several times we’ve attempted this, she seized. Eme’s been off her antibiotic schedule for 2 days, her white count is up (that means infection), her urine is streaked with yeast & blood, is very, very cloudy and is growing sodium crystals (also indicates infection).
Dr. B put the line in this morning.  I talked to him for a while afterwards… this is CRAZY, I feel like I’m beating my head against a wall around here these days.  Did everyone forget who Emerson is??  Can we PLEASE, PLEASE all accept that Eme has NO peripheral IV access left & any placement should be considered a ‘lucky’ stick that is unlikely to last longer than 5-6 hours… NOT 1-2 days.  Further, can we PLEASE, PLEASE all agree that we’re NOT going to do something like pull a central line on a Friday??  Honestly!!!  Dr. B said he was amazed that anyone did so & was even more amazed that anyone expected her to get through the weekend without one.
I told Dr. B I’m tempted to ‘stumble’ into a Thursday (closed & private) transplant meeting just to have the audience of all 4 surgeons at once.  He chuckled.  Not possible, but then again when has that ever stopped me?!?  I just talked to the Infectious Disease doctor & he said this Klebsiella really scares him.  Yep – me too.  He said all are leaning towards a long, extended course of antibiotics.  How long?  No one’s willing to plan when it comes to Emerson, she still hasn't even had a negative blood culture yet.  We’ll just have to wait & see what next week brings…
It's 12 noon Sunday & I’m finally going to bed.  Good night!
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How Is Emerson?
Submitted by Erika on Mon, 06/28/2010 - 2:10pm.
It’s the most frequently asked & most difficult question to answer these days.
How is Emerson?  Let’s see... she has a very serious & life-limiting blood infection she can’t clear, but the antibiotics seem to be controlling it at the moment - she’s not spiking fevers & is generally feeling okay.  She has an IV coming out of her neck which is terribly uncomfortable & she’s hooked up to 4 pumps & 4 tubes 24 hours a day.  Still, though, if she positions her head just right & keeps the IV pole close by it doesn’t seem to bother her too much.  She poops & pees into 2 separate bags, one hangs on the right side of her body, the other on her left.  She hates having her bags emptied (every 4 hours), & the site of her new vesicostomy (urine) is sore, but she is spared diaper changes.  She lives in a hospital, but doesn’t really know life any differently – only I know all she’s missing.  In her room she has a kitchen, a dollhouse, a doll stroller & high chair, a bean bag, coloring books, barbies, a television, & tons of DVDs.  She sleeps through the night & naps every afternoon.  And, thanks to the new “schedule” I’ve created & posted (everywhereJ) she also has craft time, story time, & play time every day.  Doctors visit each morning, techs record vitals every 4 hours, & nurses administer meds and change dressings as needed (which seems to be about once an hour).  Some days she has more energy than others, but most days she’s eager to play & socialize!
How is Emerson?  She definitely could be worse but she also could be better.  She’s growing up in a hospital, but she is growing up.  For a long time there wasn’t much hope for a life outside these walls, today there is lots!  Overall she’s doing well.  Her spirits are high & she seems mostly unfazed by the cruel hand she’s been dealt in life.  I’ve asked the team to start making decisions most likely to afford her short term gains.  At this point I’m less concerned about long-term side effects.  I just want to give her a chance to experience life as most (almost) 4 year olds know it… for however long that might be.
Thanks for checking in &, as always, thanks for your love and support as we continue along on this crazy journey!
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Changed Plans
Submitted by Erika on Wed, 07/07/2010 - 4:33pm.
Rough week last week… changed plans, broken promises, heavy heart.  I’ve started this post at least 4 different times & have written it in its entirety twice.  In the end, though, I needed time to pull my thoughts together so I could compile something coherent & respectful.  So, I hopped on a plane & spent 3 days at the beach with Jim & the boys.  It’s Wednesday, I’m sitting at the airport in Detroit headed back to Omaha & the phone just rang – it was the hospital & plans are changing again.  I’m rested now, though, & am better able to put it all in perspective.
I’ll save you the details that got us to today, but will tell you the team (mainly Infectious Disease) has decided against a long course of treatment for Emerson’s kidney infection.  They’re also standing firm in their opinion the kidney should not be removed.  It all, basically, sets us back several months & means Omaha is more or less doing nothing in regards to the lesions on Eme’s kidney (the main reason we came here in the first place).  It also means the care conference was basically a waste of time.  What’s more, they opted to treat Eme’s most recent Klebsiella for only 8 days from the first negative culture.  ID “standard” is 14 days.  They’re not even completing a full course of treatment.  They've decided the risk of this bug growing resistant to the last available antibiotic is too high.
They are, however, creating a permanent stoma for urine drainage & they tell me it’s our best and only hope of ever managing this Klebsiella.  If it doesn’t work I’m told the vicious cycle of this infection will likely never end & Eme could well spend the rest of her life in a hospital.  It’s all very upsetting.
After thinking & talking (& crying - lots of crying), I’m coming to terms with it all & am trying to focus on the positives of the newest “plan”.  The transplant team has agreed to skip Emerson’s scheduled 3rd dilation & instead perform the final surgery at that time.  It will take place the week of July 19th.  We’ll be required to stay roughly 2 weeks post-surgery & should be out of Omaha early August.  In the mean time, Emerson’s line “fell out” today & she’s being discharged tomorrow.  I’m planning to get in the car & drive back to the beach for a week… together.
That sounds great – a small bit of the quality of life I’ve been pushing so hard for - I know, but please resist the urge to cheer.  I’m very upset about the way they’re handling the lesions on Eme’s kidney(s) here & do not agree with the current course (or lack thereof) of treatment.  We need to be more aggressive.  We’ve gone the conservative route, we’ve waited & we’ve watched.  That's not so hard for the doctor who thinks about Emerson 5-10 minutes a day.  This is our life, though.  This infection has been present for over a year & I’m beyond ready to do something.  I’m ready to take chances.  Things need to improve, & if they can’t this needs to end.  God forgive me for saying so, but I never wished this for my daughter.  I didn’t consent to transplant to give her a life in the hospital.
This is all so wrong in so many ways.  I had a wonderful time on the beach, but was continually reminded of the cost of this journey.  Things have changed.  My marriage is different & the relationship with my boys is too.  I’ve been gone a long time.  What’s more, Emerson’s cousin Cate was there.  She’s a beautiful, fun loving little girl - four years old & full of spunk.  Everything Eme should be, but is not.  It’s easy to forget all she’s missing living in a hospital, but is impossible to ignore when you’re around others her same age.  It’s just hard.  I don’t even know what I wish for anymore.  And please don’t mistake that for giving up, I’m not.  I continue to believe there’s a rainbow waiting for Emerson at the end of all this.  I honestly don’t know how else to do it…
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A New Day
Submitted by Erika on Thu, 07/08/2010 - 2:49pm.
I arrived last night with lots of questions as to how exactly Emerson’s central line “fell out”.  I’ve been at this a long time now & I can confidently tell you that just doesn’t happen (especially when it’s stitched to your skin).  I was told no one knows for sure but it appears that a volunteer may have accidently pulled it out when putting her back in the crib.  Okay… I can accept that.  Accidents happen.  I’m not thrilled about it, but am happy for an explanation that makes sense.
To be honest, I showed up last night with a bit of an attitude.  I was not happy about what was transpiring & there was no one to talk to.  I cleared out Eme’s hospital room with the plan to get out of here AQAP this morning.  I felt like I’d hit a wall with this team & just needed to get us both far from Omaha for a while.
It’s a new day today, though, & I’ve had the opportunity to talk to several people including the chief transplant surgeon, a member of the infectious disease team, & the NP (nurse practitioner).  She more or less runs the show up here & has been on vacation the past 2 weeks.  She missed a lot of the drama here & was generous enough to spend some time with me this morning re-hashing it all.  In the end she may have said the most sensible thing yet – she said she totally understands my want/need to do something & she totally understands my deep desire for that something to make a difference.  Unfortunately, though, she said they’ve all discussed it at great length & the overwhelming consensus is there’s just nothing left to do.  There is no something with any reasonable chance of making any difference at all.  So that’s where we are – at the end of our list of treatment options.
I went further & said if this vesicostomy surgery doesn’t work & there’s nothing else to do I want this to end.  It’s so hard, it’s not as if Eme’s in the PICU on life support.  There’s no plug to pull.  She’s down the hall playing in the play room with a volunteer.  She’s breathing, walking, talking, eating…  To even have those thoughts in this situation is very, very difficult to reconcile.  As I’ve said before, though, if her only chance for a life is in the hospital, I don’t want that for her.  The NP said she totally understands & if this vesicostomy doesn’t work Emerson won’t live in the hospital battling infection indefinitely.  If this surgery doesn’t work the end is not far.  She is not several years away from her last infection… it will come much sooner than that.  Indeed, she said, if this surgery doesn’t work it will end.  That’s what I needed to hear.  Not sure exactly what I wanted to hear, but that is what I needed to hear.  This needs to resolve, one way or the other.  I’m at better peace today believing it will…
The plan this morning is to watch Eme for 24 hours & make sure her fever doesn’t return off antibiotics.  Assuming all goes well she’ll be discharged tomorrow morning & we’ll drive to Michigan for a week.  At first the team was a little surprised at this request (especially when I told them my original intent was to leave this afternoonJ), but they all agreed it would be okay.  I hope to take her back to the beach in August, but there’s no knowing at this point if that will even be possible.  I’ve learned to ‘strike while the iron is hot’ with Emerson.  Where there’s a small window of opportunity, take it!
Eme’s next surgery is scheduled for 7:30 AM Monday, July 19th.  She’ll re-admit Sunday morning for pre-op.  I plan to be back in Omaha next Saturday.
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My Threshold Is High...
Submitted by Erika on Mon, 07/12/2010 - 2:43pm.
My threshold for finding a local hospital &/or driving Emerson back to Omaha is high right now.  I’ve picked up & hung up the phone at least a half dozen times.  I know I should call the transplant coordinator, but I’m terrified of her probable response.  “Take her in”… what else can she say from 800 miles away?
Eme is running low grade fevers – 100.5 to 101.5.  Her urine looks junky – lots of floating debris.  Most concerning, though, is the tube has retracted into her bladder (the stitches, which sat about an inch outside the hole are now barely visible), there’s an abundant amount of puss seeping out around the tube & she’s in a LOT of pain.  She moans & whimpers much of the day & all out screams if you even touch the catheter.  She’s not moving much & cries “ouchy” when she tries to walk.  I’m sure she has a UTI (probably a nasty one).  My main worry, though, is that there’s a mechanical problem with the tube.  I’ll manage a UTI here for the remainder of the week (assuming the infection doesn’t move into her bloodstream, that is), but I’m fearful if I ignore this there could be damage to her bladder.  She definitely doesn’t need that.
So, I called…waiting for a call back.  We’ll see what they say.  I really, really, really want to stay here.  Even more than that, though, I really, really, really want to go back to April.  I want that little girl back.  She was feeling so good.  She was 10 pounds lighter… no fluid buildup, no steroid cushion.  She smiled & laughed all day.  That little girl loved life.  This little girl is tired.  Her eyes are tired.  Her body is sore.
All that aside, I think Emerson’s having fun.  I know she loves being out of the hospital!  She really enjoys making play-doh ice cream cones on the picnic table & pouring water from the water table.  I haven’t taken her to the beach & she hasn’t been in the lake.  She’s played nicely in the shade of a big oak tree, though, with her brothers, cousins & neighbor friends.  Everyone has been really excited to see her & all have played with her so nicelyJ.
It’s raining today & we’re all moving a little slow from the weekend.  My brother & his family have gone home, so it’s just the White clan (with grandma & papa of course).  I couldn’t be happier to have all three of my kiddos in one place & hope beyond all hope it continues for the rest of the week, as planned.  

I talked to the transplant coordinator.  I’ll give you one guess.  Yep – take her in.  Eme’s napping now, but I’ll take her to the local ER when she wakes up.  If nothing else they may be able to do an x-ray & confirm the tube is still properly positioned in her bladder.  Beyond that, there’s not much else they’ll be able to do.  I fully expect them to flip out when I walk through the door with her.  I’m pretty sure this tiny lakeside hospital has never seen anything the likes of my little girl!!  Should be interesting…

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So Over All The Drama!
Submitted by Erika on Tue, 07/13/2010 - 5:02pm.
Honestly… I am!!  I seriously can’t recount everything that’s happened over the past 24 hours – unbelievable.  Was it really too much to think we could get away for a week?
To sum it up, Emerson was admitted to Detroit Children’s Hospital early this morning.  We started at the Port Huron Hospital (near the lake house, about an hour north of Children’s) & after labs, tests, exams, & discussions with Omaha she was transferred to Detroit.  They wanted an ambulance transfer.  I insisted on driving her myself.  I won!
Emerson has a terrible UTI – the worst looking UA she’s had by a long shot.  Her catheter has not retracted into her bladder.  Her bladder is swollen & visibly distended & is more 0r less swallowing the catheter instead.  She’s in a lot of pain.  She feels best lying flat on her back & as such hasn’t moved from that position since admit.  She’s been asleep most of the day, sleeping soundly through ultrasounds & lab sticks.  She’s pale & sweaty.  She’s weak.
There was no pediatrician in Port Huron that would manage an admission, so she was transferred to the closest hospital willing to accept her.  She’s complicated, “extremely complicated”.  Of course we all know that…
As expected everyone here is overwhelmed by Eme, BUT they’ve all been wonderful.  She was admitted to the Nephrology team & the head doctor delayed clinic over 30 minutes this morning to come talk to me.  He’s been back twice since.  The team has talked to Omaha several times & they seem to be working together well.  So far I couldn’t be happier with the care she’s receiving here.
I definitely feel included in the planning & the nephrologist has asked several times how I would like to see things happen over the next several weeks.  At the top of my list, I have 1 main request:  NO LIFE FLIGHT BACK TO OMAHA.  PERIOD.  We can stabilize her here & I’ll drive her back, but we’re not arriving on a Leer Jet.  Not this time.  I’m so OVER all the drama!  He was very sympathetic & said he’ll do everything possible to honor this request.  Thank You!!
Fast forward to today & I’d label this part of my post “Unexpected Surprises”.  Last night I walked into an ER in downtown Detroit.  No disrespect intended, but I pretty much feared for my life.  This morning I traveled downtairs to find a cafeteria, a full service coffee shop (think Starbucks, different name), AND a Subway!!  Awesome!  The Subway shop is lined with a wall of windows overlooking a courtyard/park with wooden picnic tables & canvas umbrellas, beautiful gardens, colorful statues, green grass… WOW!  Could this be the same hospital??  I’m walking the halls & find a “Toys R Us” play room and a group music class in session.  How cool is that?
Now, it’s an old hospital & is not particularly well kept in terms of nicely decorated rooms or comfortable sleeping chairs, but there is a lot of really neat stuff going on here.  And to top it all… they took Emerson to a treatment room for a temporary IV this morning.  I warned them about her lack of access & she’s scheduled for a central line tomorrow, but she needed a peripheral IV to get through today.  We got to the treatment room & a nurse from the “IV team” was prepped & ready to go.  As soon as I laid Eme down, a young gal from Child Life immediately started distracting her with a small collection of specially chosen toys – a princess book, a Mickey Mouse telephone… She got very close to Emerson & talked to her constantly, totally engaging her.  I wasn’t asked to pin my daughter down, I wasn’t asked to distract her or even hold her.  I simply watched as they poked for IV access & Emerson (miraculously) barely flinched.  It didn’t take 4 people to hold her, she wasn’t screaming & flailing.  It was the smoothest, most humane IV placement I’ve ever seen!!!  (Coincidentally, they were only able to get a very small line in a very small vein, but we’re all hoping it will get her through the night).
Last, & far from least, the kidney transplant coordinator sat with me for a bit this afternoon.  After a short conversation she offered to bring all her charting into Eme’s room Thursday and spend the whole day here so I can spend the day at the beach with the boys.  Wow… wonderful, wonderful people!!
There’s so much more than all that, but I’ll leave it here for now.  We’re in the process of formulating a plan & everyone seems very anxious to do so.  Thank goodness for that!!  And the saga continues…
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It's Happening
Submitted by Erika on Wed, 07/14/2010 - 2:29pm.
The final reports are in & Emerson is growing, again, the ever-present Klebsiella in her urine.  It came back after only 3 days off antibiotics.  As I said before, this one is nasty – the worst UTI (at least on paper) she’s ever had.  The sensitivities returned today & the bug has now morphed from an ESBL to a KPC.  Infectious Disease in Omaha treated her last infection (last week) with a combination of drugs testing intermediate in their efficacy.  The bug has now grown completely resistant to them both, which officially classifies it as a ‘KPC’.  I asked how that compares to MRSA or VRE & was told its much, much worse.  My hospital friends will understand all the acronyms – to everyone else just know it’s bad.  I looked it up online & had to stop – it’s more than a mother needs to know.  It’s an antibiotic-resistant superbug in every meaning of the word & it’s very scary.
We are literally at the end with this organism.  Eme was switched today to a drug that’s highly toxic to her kidneys and there’s one possible combination of drugs left to try if this doesn’t work.  One of those drugs is not compatible with her anti-rejection med, though, & causes heart abnormalities/arrhythmias.  We’re obviously hoping to avoid it but infectious disease said they’ll use it if they have to.  Beyond that it's over.  ID said on the entire face of the earth, it's all we have left.
The nephrologist said Eme’s Klebsiella is the single strongest bug he’s ever seen and it may be the strongest this hospital has ever seen too.  She was moved around a lot yesterday, finally ending in the desired location (hematology/oncology, kidney transplant, & bone marrow unit).  Infectious Disease said they’re emptying out the 2 other rooms she was in & hazmat cleaning them this afternoon.  Everyone who enters is in full precaution.  There is possibility for an outbreak amongst other immune-suppressed patients on this hall & that could be disastrous.  Of particular note, though – otherwise healthy children/individuals are not at risk for acquiring this infection.
Emerson is not any better today.  I’d dare say she’s worse.  She’s still sleeping all day & not alerting to much of anything.  She sleeps soundly through vitals, meds, etc.  Her urine looks awful.  She’s pale & still in a lot of pain.  They started her on IV morphine.  The urologist changed out her bladder catheter today - together with the switch to a new antibiotic, things will hopefully start to turn around in the next 24 hours.
I had a really good conversation with a coordinator in Omaha yesterday.  We decided to proceed with a tunneled central catheter (line) here & continue treatment in Michigan until Dr. B is willing to take Eme into surgery.  I’d originally planned to drive back as soon as Eme is stable, but instead have decided to stay here as long as possible, close to the boys.  The coordinator said everyone in Omaha is very sympathetic to our situation & understands the need for us to try and put together a life – however possible.  It’s so, so hard.  At the evaluation (several years ago) I was told about a recent survey of children 5 years post intestinal transplant.  ALL perceived their life as equal to that of their peers.  Wow… that was the dream – not existence, but life.  When we consented to transplant we knew Eme had a 50/50 chance – a 50% chance of having quality of life & a 50% chance of not surviving.  What we never considered, though, was the situation that has transpired… somewhere in-between… a place where Emerson survives, but never finds quality of life… a place where she lives in the hospital, squarely between the worlds of good and bad.  The coordinator said every now & again it happens and eventually the child will declare themselves.  In the interim, though, it’s a challenge for all involved.  She shared with me the sentiment of a mother who once found herself in my exact same shoes – she said, “I’ve lived in my daughter’s world for years, one way or another she now has to come live in mine.”  I tear up just writing it - I so get that.  Don’t misunderstand me, I’d do it all over again.  It was worth it if only for the chance… at the time of transplant Eme had much more daunting odds for survival – 0%.
In all, and back to Eme’s Klebsiella, the news is not good.  She’ll recover from this one, though.  It appears to be contained in her bladder & kidneys, her blood is still testing negative for infection at this time.  They repeated blood cultures today.  We can treat this one… it’s the next few infections to come that could end much differently.  We need to keep them at bay.  In Omaha today, though, there is a little girl in a much different place.  Little Ashley Kate has battled rejection twice since her transplant nearly 4 years ago & is back in Omaha this time fighting for her life.  She has end stage rejection & the situation is grim.  The odds of keeping her bowel are low & the odds of keeping her alive through it all aren’t much better.  I’ve witnessed a miracle, though, & know it can happen!  I can’t get this sweet girl and her family off my mind this week.  It’s one of those few times I actually wish I was back in Omaha to lend a sympathetic ear.  Please join me in prayer for Ashley Kate & her family.  Her mother Trish is sitting bedside while her dad, brother, & sister are back in Texas.  If Ashley can do this it’s going to be a long road back home.  My heart aches so badly for them.  Please pray for their strength & resilience through this terribly difficult time.  Thank You!!
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More Bad News
Submitted by Erika on Thu, 07/15/2010 - 9:41pm.
I’ll start with the positive… the new antibiotic has kicked in & Emerson is starting to feel betterJ.  She is still in some pain, but her urine looks clearer, she’s sitting up, & she’s much more alert throughout the day.  That’s the good news.
Now the bad… the drug we started yesterday cannot be used alone to treat this infection, so the team has added one additional antibiotic.  This puts us at the last possible combination of drugs available.  We are now officially out of options.  There is nothing left.  Period.  No single drug, no combination of drugs.  Nothing.  And to make the bad news even worse, the final drug they started today interacts with her anti-rejection med & can cause sudden cardiac death - sudden death, unexpected, at any time.  They did everything possible to avoid this drug.  They tested several obscure antibiotics in the lab & all returned resistant.  So, she’s on 2 antibiotics – 1 can cause permanent kidney damage, the other sudden cardiac death.  It’s not a pretty combination.
Needless to say Emerson won’t be leaving the hospital until treatment is completed (which could mean a dreaded life flight back to Omaha).  She’ll be receiving regular EKGs & is on a heart monitor.  Course of treatment is 2 weeks from the date of the first negative culture (which we don’t have yet).
At the end of the day, I’ve gone from believing she’ll get through this one & being worried about the next few infections to being worried about this one & terrified of the next – not the next few, the next one.  This sucks!
We sure would appreciate your prayers at this time.  Eme’s angels have their work cut out for them in the coming weeks…

P.S. – I spent today at the lake with my parents & the boys.  It was great – just what the doctor ordered (for me)J!  Many thanks to Veronica for sitting with Emerson & for encouraging me to get away!!

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Detroit Medical Center
Submitted by Erika on Fri, 07/16/2010 - 10:09am.
The DMC is a large medical center located downtown Detroit.  The Children’s Hospital is one of several hospitals on campus.  Following is a list of them all:
Children’s Hospital of Michigan
Detroit Receiving Hospital
DMC Surgery Hospital
Harper University Hospital
Huron Valley-Sinai Hospital
Hutzel Women’s Hospital
Kresge Eye Institute
Rehabilitation Institute of Michigan
Sinai-Grace Hospital
Karmanos Cancer Institute
The infectious disease doctor has risen to his latest challenge (aka Emerson) & spent yesterday researching her ever-present organism.  He announced this morning it’s officially the strongest bug EVER seen at any DMC hospital.  “It’s not just the strongest one here at Children’s, it’s the strongest bug ever seen (at any of the center’s 10 hospitals)”.  That’s huge & is certain to gain her some notoriety around here.  Not sure that’s what you want your daughter known for, but it is what it is.
There’s talk today of possibly moving Emerson to a PICU step-down unit for better monitoring of her cardiac activity.  Otherwise she continues to improve clinically & is sitting up and playing nicely todayJ.  The nephrologist even said, you're right when she's feeling well she really does look good (with a hint of surprise in his voice).  Yep... hard to believe if you're looking at her on paper, but that's what I've been trying to tell everyone all week!  I’ll post pictures soon!
Oh… & her culture returned positive for pseudomonas too.  It’s another nasty bug, but is testing much less resistant & is susceptible to the antibiotics she’s already on.  That’s good news!
We continue to be thankful for the wonderful care Eme’s receiving.  Thanks to all here for the time & energy spent trying to understand my complicated little girl.  And thanks to all you for the continued prayers!
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Plans For Today
Submitted by Erika on Sat, 07/17/2010 - 9:28am.
1)       A butter bear coffee from Biggby (caramel & butterscotch… yummmmm) – that one’s doneJ!
2)      A video (Barbie’s A Mermaid Tale) & story with Emerson – in process.
3)      Stop by Toys R Us to pick up some toys (Eme’s getting a little bored).  My newest thing is Playmobil.  They have several “take along houses” (great, portable play houses), lots of fun people (that bend in all the right places - nothing worse than a mom & dad who won’t sit down!), playsets, etc.  I love them all!!  I’m on the hunt today for the portable vet clinic, complete with “meows” & “lellos” (aka cats & dogs for those of you new to the site).  I also love, love the suburban house with all the extensions – you can make a BIG doll house!  I’m thinking that one goes on Santa’s list this yearJ.
4)      Happy Hour at the lake house!!  I’m leaving late this afternoon & driving up north for hummus, pita chips, salsa, tortillas & a margarita with the family.  My brother & his wife are there for the weekend as are my parents & the boys (of course).  I plan to drive back to the hospital late tonight.
5)      A fierce game of UNO flash with the boys!!  If you’ve never played this version of UNO, I recommend it – it’s a blastJ.  With any luck I won’t be left with all the cards!!
6)      Maybe a quick dip in the lake?!?  The boys are having contests to see who can stand on a floating inner tube the longest – it’s a lot harder than it sounds.  The record so far is 4 seconds.  Should mom try to top that today??  We’ll see…
7)      A beach bonfire??  With toasted coconut s’mores??  Yep – sounds like a great plan!
Its boat weekend at the cottage, which means today starts the Port Huron to Mackinaw sail boat race.  It’s a beautiful spectacle to see all the big boats sailing past the cottage flying their huge, colorful sails.  Unfortunately they start early so I’ve missed them this year.  There’ve been lots of activities around town, though, & Papa took the boys to see all the boats at dock last night.  Fun stuff!
Emerson’s bladder catheter fell out over night (don’t ask how… I have no idea).  By the time we discovered it this morning, the hole had already started to close.  As you may recall, they’ve been stretching the size of the hole with dilation surgeries in Omaha over the past 2 months.  Well, today we are officially back to the size of the original catheter placed – 2 months ago!!!!  Did we really go back that far?  Will it really take that long to get us back to the point where the final surgery can be done??  I don’t know those answers.  I just know it’s not good.  I’m devastated & could literally cry.  But, instead, I’m choosing to think about Playmobil toys, margaritas, and a bonfire with the boys.  It’ll all work itself out, it always does – never on my time frame though, unfortunately.
Lastly, to answer a few reoccurring questions:
•         Jim is not able, sadly, to switch places with me here at the hospital.  He runs an automobile dealership & works 6 days a week.  We rely heavily on the success of his business to help us financially through this difficult time.  Does he have vacation time??  Not a lot, & what he does have he spends with all of us – i.e., 4th of July at the lake, the Make a Wish trip in February, occasional long weekends in Omaha.
•         Jim is a partner in the company & is not, therefore, able to simply “find a new job” in Omaha.  I wish… Our entire future, retirement, etc. is tied up in his business & we’re just not able, realistically, to let that go.  In an ideal world none of that would matter.  However, the reality is we need his income to pay the mortgage, put food on the table, save for college, etc.  Our responsibilities are wide & include more than just Emerson at this time.  It’s a personal choice we’ve made & one we feel is best, ultimately, for all involved.  Unfortunately, there are no easy answers.  I feel blessed to have a partner in all this who accepts his role (as I’ve accepted mine)… it’s been very difficult on us both.
•         The boys are doing great.  I’m sorry if I don’t discuss them more, I just think everyone comes on here to read about Emerson, not them.  If you want more brotherly updates, though, I can certainly obligeJ.  We’re starting to think about school & fall activities (hard to believe)!!  Collin is heading home to Colorado in the next week to get back on the ice in preparation for hockey try-outs late August.  He’ll be a Pee Wee this year & will start checking for the first time.  I’m really hoping he makes it through the year with all his teeth!!  We’re considering sending Bradley to a new school this fall & he’s a little anxious about that.  Collin & Bradley have been at different schools for the past 3 years.  They’ve relied heavily on each other through all this & I’d like to have them together, again, at the same location.  Bradley’s been working on his cursive writing & wants desperately to try the half-pipe (skateboarding).  I’m hoping to redirect his athletic interest elsewhere!
•         I’m working on compiling some pics from the lake & will create an album under the “Photo Album” tab this weekend (promise).  I’ll let you know when it’s complete!
Hope you all have a wonderful day!!
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If Only I Could Post A Video Clip
Submitted by Erika on Mon, 07/19/2010 - 9:16am.
…it’d put a smile on your face this morning for sure!!  Emerson is in rare silly form todayJ.  She’s a crazy one & she’s driving me nuts!!!  Of course I’ll take it, but she is one demanding, self-centered, do it my way & do it NOW little princess.  Today’s conversation so far goes something like this… “Mom”, “what?”, “MOm”, “what Emerson?”, “MOM”, “yes Emerson what do you want?”, “MMMMOOOOOOMMMMM!!!!!!!” (you get the gist of it).
There’re a few little mechanical issues with Eme’s bladder tube & the site is still very painful, but she’s otherwise in good spirits.  They’re repeating an EKG today to measure the electrical activity of her heart now that she’s been on the nasty med combination for a few days.  She’s on day 5 of 14 for treatment & discharge is planned for a week from Wednesday.  I need to talk to Omaha to see how things will play out from there.
I honestly think the team here is shocked… like jaw on the floor shocked.  They can’t believe how different she looks from last week.  You honestly have to see it to believe it – when she’s feeling well you’d never in a million years guess all this child has been through.  2 multiple organ transplants (8 organs in all)?  Code Blue?  Multiple systemic organ failure?  Spontaneous fractures in all limbs?  Countless months on 24-hr dialysis & the ventilator?  4 prolonged episodes on the oscillator (high frequency/last resort ventilator)?  The worst case of intestinal pneumatosis Omaha’s ever seen?  Virtually zero hope for survival?… (yep, there’s more).  Unbelievable, it really, really is.  That’s my girl – she takes a lickin’ & keeps on tickin’.  I’m not sure where she gets the stubborn streak from, but let’s hope it lasts… (although a little sweet patience when she’s feeling well would be nice!)

 

I had a great trip to the lake Saturday & accomplished all but the swim and the bonfire (bad weather).  Emerson loves the Playmobil vet clinic (she calls it her "lello house") & it even keeps her occupied for up to 20 minutes at a time (sweet silence).  My mom & the boys are driving to the hospital this afternoon.  Eme will be super happy to see her brothersJ!
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Happy?
Submitted by Erika on Mon, 07/19/2010 - 7:48pm.
Did I sound happy in that past post… wow – I must have written it before the day really began!  The truth is I’m going crazy here.  The doctor’s are great & yes, they’re making good decisions & yes, I’m very thankful for a second set of eyes.  But……..let’s just say I’ll never complain about the care Eme receives in Denver or Omaha ever again.  There are no words to explain how much it means to be amongst medical staff (nurses) who really know us.  They know Emerson – what she’s been through, what she likes & dislikes, what her screams mean, when to leave her alone.  They know me – what I like to be involved in, what drives me crazy, when to call, when to leave me alone.  As far as the nurses here are concerned we just walked in off the street.  Some don’t know what organs she had transplanted & most have no idea how long she’s spent in the hospital (hello - does she have a patient chart?!?).
They make her stay in her room with the door closed at all times.  They have no central monitoring of her heart leads or pumps, but can supposedly “hear” it all just fine.  Well… I’m telling you, pumps are beeping incessantly ALL day & ALL night long in here.  Just to prove a point (mostly to myself), I let one pump go today to see how long it would alarm before someone responded.  36 minutes later a student nurse walked in to take vitals – she shut it off.  The pump alarms 12 times per minute.  Multiply that by 36 minutes & in all it sounded 432 times.  No wonder I had a raging headache today!!
Don’t get me wrong, they’re all very nice here – our nurse tonight is super friendly.  They just don’t know us.  It’s not their fault; it just makes me appreciate everyone in Omaha & Denver even that much more!!
Beyond that, Emerson is really, really ornery.  And I don’t mean kinda testy, I mean all out, full steam ahead ornery.  She’s throwing toys, pulling out her hair, screaming at me… she wants her video changed every 5 minutes, wants water, throws it on the floor, wants more water…  I was contemplating adoption today, but was pretty sure no one would want her!  I seriously think she needs something to help calm her down.  At this point, what’s one more med? (& I say that in all seriousness – it’s really not so funny or cute anymore).
Phew… how’s that for a change of mindset.  Keep with me & you never know what’s coming next!!  On a funny note, a while back I posted the following (after Eme’s 1st transplant):
“Bipolar disorder is an illness of severe mood swings. It is also called manic depression. If you have this illness, you may have periods of severe high or low moods.”
It’s official – I’m bipolarJ.
I was joking, of course, but several people thought I was serious.  They very cautiously recommended I see someone & get on the appropriate meds.  Ha, ha… guess my mood does change rather often.  Up, down, up, down… it’s kind of the nature of this journey.  I try to stay positive, but in the end it just plain sucks!
Finally, and on a totally different note, I want to respond to some more questions I’ve been receiving.  I’ve thought long & hard about how to reply and even posted a response once, only to delete it 5 minutes later.  In the end, we’re in an impossible situation & there really is nothing I can say that would adequately explain why we do what we do.  Simply put, I can’t make you understand.  There’s no way you could, and that’s okay… really it is.  I don’t fault anyone for asking questions & I don’t fault anyone for not understanding – I totally get it.  There are only a select few people I know who can understand & they are my intestinal transplant friends from Omaha (or other out of state centers).  I wouldn’t wish this journey on my worst enemy & if living through it is the only way to ‘get it’ I’m glad none of you do.  And I mean that from the bottom of my heart.  I hope that makes sense.
Please know Jim & I have thought through every possible situation in the entire universe… we talk about it ALL the time.  Can/should we cut ties with Omaha?  It’s so complicated… I suppose technically we could, but it’s certainly not in Emerson’s best interest.  The field of intestinal transplant is highly specialized & there are very few hospitals in the country that know anything about it.  After everything we’ve done to get Eme this far, we’re not about to start making sub-optimal treatment choices for her now.  It just doesn’t make any sense… we’re so close.  My heart, mind, and body have fought so long & so hard for this little girl, I don’t know how to stop fighting.  Will they always want her back?  The short answer to that is yes – anytime things get complicated &/or anytime our home hospital is uncomfortable managing her care.  Ideally Eme will stay in Denver for things like dehydration caused by viral illness, UTIs, etc.  She’ll almost always return, though, for rejection and/or any discussion regarding loss of graft (transplanted organ).  Unfortunately, Eme hasn’t had many minor complications yet – she likes to do things big.  We’re all hopeful, though, that things will start to calm down in the near future.  If they don’t you all know the anticipated outcome.
In the end, I always welcome your questions - you’re just trying to make sense of it all.  Trust me… I have just as many questions as you do.  It’s an almost unbelievable situation.  I often liken this blog to a reality internet series.  If you didn’t see it &/or read about it you’d never in a million years believe it’s actually happening.  I certainly never knew people lived in hospitals apart from their families for years on end.  I thought people went to the hospital, stayed a few weeks, then got better, transferred to a long-term care facility, or died.  I honestly never knew people lived in hospitals!  Indeed they do…  It’s just surreal, the whole darn thing!
Another (long) chapter in the novel that is Emerson… geesh, I must be boredJ.
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Christmas In July?!?!!!
Submitted by Erika on Thu, 07/22/2010 - 10:14am.
Wow… could it be??  Did Santa really read the blog this week & find his way to room 681 last night??  By the looks of the boxes that arrived & the surprise on Eme’s face you certainly might think so.
But alas, it wasn’t Santa (I checked – he’s in the Caribbean resting up for a busy holiday season…).  Nope, it wasn’t Santa, it was a little angel named Zoe (& her mom Kathleen from Colorado Springs).  You would not believe what arrived from them this morning – a huge Playmobil house AND furniture for every room!!!!
The furniture actually arrived yesterday & Emerson played with it ALL day long.  She quickly retired the vet clinic & was interested only in playing house.  She loved the people & spent the day arranging the family room, putting everyone to bed, waking them up, feeding them, putting them to bed again… Then this morning the house arrived & you should have seen the look on her face.  Oh My Gosh – I thought it might precipitate the cardiac arrest we’ve been watching for all weekJ.  The excitement on her face was priceless!
I opened the box to find a million little pieces to assemble, so I think I’ll leave it for Collin (he loves that kinda stuff).  That’s assuming, though, I can survive the day listening to “momeye me, momeye me, momeye me” (pointing to the box) ALL DAY LONG.  We’ll see how long I can hold out!
Looks like I’ll have to think of something new for Santa to work on.  A million thanks to little Zoe & her mom for brightening my little girl’s life this week!  Thanks, also, for delivering me some peace – Emerson played beautifully (& quietly) all day yesterday!
Of course many others have contributed to Emerson’s fund &/or sent gifts over the years.  A few select donations stick out in my mind… like the grandmother of Bradley’s classmate who sent a $1,500 check with her to the bowl-a-thon this year.  Wow!!  And of course the company (Medco) who adopted our family for Christmas & sent 15 huge boxes of wrapped gifts to all three of my beautiful children!  And the employees from Medco who continue to bless us through the years – from American Girl Store gift cards, to books, to ‘lellos’…  And of course to the countless others who’ve given $5, $10, $20 & who’ve sent cards, stickers, zhu zhu hamsters, videos… they’ve ALL added up to enrich our lives in ways you could never know.  Even the simplest little thing puts a smile on our faces & that, many days alone, is a gift beyond compare.  Thank You to each & every one of you.  We are so blessed!
Okay… now Eme’s yelling “momeye, bye bye dat (pointing to the computer), momeye dat (pointing to the house)”.  Looks like I’ve got a project on my hands!!  I’ll let you know how it goesJ.
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Plan
Submitted by Erika on Fri, 07/23/2010 - 7:25pm.
We finally got everyone on the same page & we finally have a plan!  As much as I’d hoped (& pushed) otherwise, Detroit will not take Emerson to surgery to dilate her bladder catheter back upL.  It’s a simple procedure but, as I was reminded many times, nothing is simple with Eme anymore.  Detroit simply doesn’t want the risk of something going awry on their watch.  And for as much as I’d like to stay here through the end of antibiotic treatment (next Friday), we really need to get this bladder catheter resized so we can schedule the final surgery, get back to Colorado, & get on with our lives.  I said I needed to be home by the start of the school year (Aug 19th).  After this set-back with the catheter, though, I’m told early September.  I just can’t push it back any further than that.
So… Eme is scheduled for surgery in Omaha next Wednesday afternoon.  We’ll drive (private car, no life flightJ) back Tuesday.  She has an IV med that will run from 9-10AM & we’ll leave immediately after that.  It’s an 11 hour drive from here.  Cardiology has cleared her to come off monitors for the drive and infectious disease has approved the mode of transport as well.  In all she’ll miss 1 dose of IV antibiotic & will be late on 1 other.  Omaha will have a bed waiting for her upon our arrival…
I talked to the coordinator in Omaha today & very nicely laid out my plan for the next month - dilation surgery next week, final surgery 3 weeks later, 2 weeks in Omaha to make sure everything’s working properly, then home by September 1st.  She chuckled & said that sounds nice, but would assume Eme’s on board which, in the 2+years we’ve been in Omaha she never has been.  Her plans always seem to follow a different schedule than mine.  Indeed, Emerson is in charge & always has been on this journey!
A big shout-out to Mary & her nursing students from OU today… they’ve been with Emerson on and off this whole admission.  We’ve had a lot of nursing students & instructors over the years & I’ll tell you, these guys were really a pleasure to work with.  Mary was very involved and the students were responsible & respectful.  As the mom of a chronic kiddo I really appreciate that.  As I’ve said many times before, I struggle daily to make sense of all this.  The very least I can hope for is that people – students, nurses, doctors – will learn from Emerson & be better able to manage those who follow in her footsteps.  Hopefully Eme had an impact, however small, on these student nurses & hopefully they, as a result, have learned something from her!
Emerson was in good spirits today, although it’s 10PM & she’s been sleeping since 2!  She woke up for 10 minutes screaming & has drifted back to sleep again.  I think she’s just exhausted from this admission, but I always get a little nervous when she does this – especially with a central line in.  Hopefully she’ll wake up alert & well rested tomorrow morning.
Finally, I had the opportunity to visit with my college roommate this week – it was awesome!!  I hadn’t seen her in years.  We talked for several hours & could have done so for days!!  This weekend I’m hoping to catch up with some more old friends (make that young old friendsJ).  For those who are wondering, yep – I grew up here!  I also plan to spend tomorrow at the lake.  It’ll be my last day with the family this summer.  How I hope & pray next year will bring us the chance to stay for much longer!
Have a fabulous weekend… I’ll update again soon!
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Back In Omaha
Submitted by Erika on Wed, 07/28/2010 - 7:24am.
We’re here!  We rolled into town about 9PM last night – a 12 hour drive.  We made it with minimal stops for coffee, gas, & meds.  Emerson was a champJ.
It was soooo nice to arrive to a team of nurses who know us so well (& who try so hard to make us comfortable).  They really take care of both of us & I really appreciate that.
Lots to talk about today… I sure hope the team has a few extra minutes for me this morning.
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A New Approach
Submitted by Erika on Wed, 07/28/2010 - 3:42pm.
Current admission?  3 months (minus 2 short days) & counting.  Number of 30 day periods spent out-patient since January 2008 (2 1/2 years)?  ONE!
I CAN’T do this… I can’t DO this… I can’t do THIS… I CAN’T DO this… I CAN’T DO THIS ANYMORE!!  How else do I say it?  Are there other words that would make it clearer??  How do I get this team to hear me??
That’s how I prepared to start my conversation with Dr. M this morning, but then it dawned on me… what’s the point?  What does it really mean?  No one is keeping us here against our will.  I brought Emerson here to be treated because I believe they are the best at what they do.  2 1/2 years ago I asked them to save my daughter's life.  They did that.  They are not God… they cannot “cure” her.  Emerson is sick.  She was born this way.  They are not making her sicker, they are trying to help.  They don’t want her here anymore than I do.  Indeed this is the dark side of transplant.  And unfortunately, this is Emerson’s course.  So, now I’ve decided to take another approach…
Dr. M came in & I shot straight to the bottom line… this is what I want & why.  No more vague statements implying the difficulty of all this, rather a firm plan about what I’m willing to accept as far as treatment goes.  “I can’t do this anymore”… okay, that’s been well established but what are we going to do about it?
Here, in a nutshell, is the problem (understanding the basic principal of it all – anywhere there is plastic in the body there is a breeding ground for serious infection):
Emerson’s antibiotics finish Friday.  If we follow the plan of catheter dilation it’ll be 3-4 weeks until the next dilation &/or final surgery & she’ll sit for the next 3-4 weeks with a central line & a plastic bladder catheter in place.  That, my friends, is a massive recipe for disaster.  I think about it & visions of the code run rampant through my head.  She harbors a highly antibiotic resistant, life-threatening organism.  You put plastic in her body, stop the antibiotics, & boom – you’re asking for it.  Unfortunately, the next “it” could really be IT.
Do you pull the central line & place another one before the next surgery?  Then you’re looking at a likely UTI from the plastic in her bladder, but may avoid another dreaded round of sepsis.  At the rate at which we’re placing & pulling central lines, though, Emerson’s next life-threatening condition will be the loss of central line access.  She’s already lost all peripheral access.  To lose all central access too would be catastrophic at this point.  We’re between a rock & a hard place right now.  There are no easy answers.  This organism has morphed again & we’re now officially OUT of treatment options - the price of poker has just gone up (Dr. M chuckled at that commentJ, but it’s true).
To make things even worse, the whole process of dilating this hole & turning it into a permanent stoma for urine drainage has never been done here before.  They don’t even know if it will ultimately work.  The possibility of us getting “stuck” here for many, many more months is becoming a near certainty.
So… what do we do?  We end this.  That’s what we do. We find some way to complete this process NOW (rather than 3-4 weeks from now - you might be surprised to know how much can go seriously wrong in 3-4 short weeks), we pull the plastic from her body, & we send her tired little body home to Colorado and see what happens.  Maybe she can do it, maybe she can’t, but she doesn’t have a fighting chance the way things currently sit.
To sum it all up, this is what I want:
•         A permanent hole for urine drainage
•         All plastic OUT (bladder catheter & central line)
•         HOME
Now another option has been thrown into the mix – should we just remove Eme’s bladder all together?  She has a completely non-functional bladder that is (by all accounts) harboring a deadly infection.  Why are we trying to save it?  It will never work.  The only problem is it would entail a major surgery through her transplant scar.  Everyone wants to avoid that for obvious reasons, but again… the price of poker has just gone up.
In a surprising end to it all, Dr. M said “This may not happen often, but I agree with you 100%”!  So, Eme had her dilation surgery today.  Dr. M will review with all the other surgeons, eyeball the bladder catheter site tomorrow, & either
1) follow through with the original plan & perform the final surgery to create a bladder stoma either Friday or early next week, or
2) remove her bladder next week.
Either way we’re looking at about 2-3 weeks of recovery & back to Colorado.
It’s time…
Oh, & for what it's worth - I think she can do it.  I really, really do!!

Sorry if I didn't explain it well, I've already had this question a few times:
If they remove Eme's bladder how would she pee?
They'd attach the ureters (the tubes between the kidneys & the bladder) to a piece of small bowel & bring it to the surface to create a stoma.  It would look just like her ileostomy, but it would drain urine.  This is done routinely with people who have bladder cancer.  All urine, then, would drain from her kidneys directly into a bag attached to the outside of her body.

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Surgery Tomorrow?
Submitted by Erika on Thu, 07/29/2010 - 10:01pm.
We decided to go ahead with the original plan to pull Eme’s bladder mucosa to the surface & create a permanent stoma for urine drainage.  If that should prove unsuccessful we’ll proceed with the removal of her bladder.  I read some more about what it would entail – both surgically, anatomically, & for future quality of life & I’d really like to preserve the organ if possible.  If not, okay… but I’ll always know we tried.  Dr. M agreed & said organ removal should always be the very last option on the list.  So, we’ll try this first.  Fingers crossed it worksJ!
Dr. M came in this morning & again I proceeded with my ‘to do’ list.  His reply?  “yes dear, yes dear, yes dear”!  Ha - I’m so glad to know we’re all coming to understand each other around hereJ.  Either that or Dr. M has aptly learned how to keep us women/mothers happy!
So… if he can get OR time, he’ll do it tomorrow!!  It’s tentative right now, as there are a few other things pending on his schedule.  If not tomorrow, I’m hoping for early next week.  Of course there’ll be a new surgeon on next week which means even the best laid plans are subject to change.  As such, I’m really, really hoping to get it wrapped up this week!
One of those “things” pending for tomorrow might well include a trip to the OR for our dear, sweet friend Ashley Kate.  You may remember I asked for prayers for her a few weeks back.  Sadly, her health continues to decline.  She’s in end-stage rejection & all attempts to save her bowel have been unsuccessful.  Today the team is considering ex-plant.  Ashley has many other strikes against her & re-transplant may not be an option.  In that case she’ll be taken home to live out her remaining days there.  To say my heart is breaking is the understatement of the year.  It’s so hard watching your own child endure this & nearly as difficult to watch those around you do the same.  Sweet Ashley was alert, active, and prospering just 2 months ago.  There’s an impending feeling of doom with it all… you can do nothing but hope & pray your loved one is not next in line.
Here’s Ashley's website (posted with permission):
http://ashleyadamsjournal.blogspot.com/
I know Ashley’s family would appreciate your prayers at this very difficult time.  In all my life I’ll never understand this…

Emerson is scheduled for surgery at 10AM tomorrow morning – I signed consent this evening!!
Although… something is not right tonight.  Her urine is draining a neon yellow color (previously clear) & her pain is excruciating.  The catheter has been uncomfortable in the past, but ever since this last infection it’s been intense – almost as if ‘something’ happened.  Could the infection have caused damage to her organ?  I don’t know, but something’s not right.  When we try to flush the catheter she cringes and screams with every tenth of a cc of saline we push & there’s a stitch coming out the end of the tubing (at least 12 inches from her body) that is apparently somehow, somewhere attached to her.  I pull it & she screams.  She’s sitting in her crib right now banging her head against the side rail, doubled over in pain, & screaming “ouchy”.  There’s a doctor on the way & the nurse is drawing up a dose of morphine.

The doctor instructed us to straight cath Emerson through the night until the team comes in to address this in the morning. He suspected her bladder is full & that’s causing the pain ????? Hmmmmm… wouldn’t have been my guess.  We did, though, & got no urine.  Just blood.  Yep, blood.  Oh, and there’s a copious green discharge coming from her rectum & vagina (or maybe it’s her urethra).  My mommy instinct tells me something is very wrong - & my mommy instinct is not often wrong.
Can this child honestly ever catch a break?  Stay tuned…
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Finally...
Submitted by Erika on Fri, 07/30/2010 - 3:58pm.
Emerson is in surgery now.  That 10AM surgery time was pushed back on account of some unplanned cases earlier this morning.  It appears the surgery is winding up more involved than originally anticipated & Dr. M may have to go in through Eme’s transplant scar.  The whole reason for dilating the catheter site was to avoid that.  In addition to creating the stoma, Dr. M will also examine the interior walls of Eme’s bladder.  There’s some suspicion she may have a fistula, ulcers, or something the like in there.  We’ll see what he finds…
I’ve been sitting in the waiting room for a while now.  I’ve heard from the OR several times, but still no word on when they may be done.
Ashley Kate will follow Emerson this evening.  Dr. M is ex-planting her bowel.  Prayers for her & her family as they face the gravity of what lies ahead.
I’ll update on Eme later this evening.
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Post Op
Submitted by Erika on Fri, 07/30/2010 - 8:17pm.
Surgery was more difficult than expected, but Emerson did okay.  Imagine her bladder as a balloon – it’s been distended for so long (because it doesn’t contract & empty properly) that it’s all stretched out.  It’s “huge”.  Apparently the site of the suprapubic catheter (where they’d been doing all the dilations) had flopped over on top of a bone ??? – the pelvic bone I’m assuming.  As such Dr. M was unable to use it.  He stitched it closed.  Yep… the 3 month process of dilating her catheter site for the purpose of creating a stoma?  All for nothing – he stitched it closed!  Bummer…
He was able to avoid the transplant scar, but did make a new 5-6 inch incision just below it to get into the bladder & pull it to the surface.  He said there was quite a bit of fat & muscle to pull the mucosa through, but her bladder was just large enough to accommodate it.  He said the surgery would have been difficult, if not impossible, to perform this way on most people.  In a traditional vesicostomy a piece of the appendix or small bowel is used to bridge the gap between the bladder & the skin’s surface.  Eme has no appendix & her small bowel is fragile – the surgery would not have been possible if it required either of those organs.  So, in a nutshell, that which made this operation necessary actually facilitated it as well.
Dr. M wasn’t able to get in with a scope, as hoped, to eyeball the inside of Eme’s bladder.  He was able to see part of it, though, through the incision & didn’t see any obvious ulcers.  He said the entire lining of the organ is red & inflamed though – likely due to repeated infection.
Emerson came out of surgery in a tremendous amount of pain.  Her blood pressure & heart rate were very high post op & she required max doses of both morphine & fentanyl.  She’s also on oxygen (2 liters).  Dr. M placed a traditional foley catheter through her urethra for urine drainage while the site heals.  He said it will stay in place 4-5 days before we attempt to use the new stoma.  The wound has been left open & will be packed to encourage healing & to prevent infection.
Emerson was transferred to the PICU.  She just started moaning again & more pain medication has been pushed.  Poor baby, how I hope this will finally allow her some quality of life.  The next step, if this doesn’t work, is to remove her bladder completely.  Please, please let the infections cease & the suffering stop…
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To My Transplant Friends...
Submitted by Erika on Sat, 07/31/2010 - 9:35am.
Do you ever wonder if these children will grow tired & simply stop fighting?  I wonder that this morning… actually, I’ve been wondering it a lot lately.  Emerson has survived because of her will to live.  There’s no other way to explain it.  Even in the darkest hour, when hope was hard to find, I heard, “her spirit is strong… hold on to that.”  What happens when her spirit fades?  Surely she’ll get tired, right?  I’m already exhausted watching her fight for so long.  I KNOW I couldn’t do it.  She’s allowed, right?  She’s allowed to be tired…  What happens then?
Don’t misunderstand me, Emerson is okay.  She continued to battle with some pain issues last evening, but rested comfortably through the night.  We’re staying on top of her meds today & she’s been sleeping most of the morning.  She stirs for cares then drifts right back to sleep.  I’m so thankful she’s able to find some rest.  Her blood pressures are a little soft, but otherwise her vitals remain strong.
The foley catheter is draining & the dressing around her new vesicostomy is mostly dry – that’s good.  I misunderstood yesterday, but the wound actually has been closed.  The stoma, though, was created in the center of the incision so it will be some time before we’re able to pouch it.  I have no idea what we’ll do in the mean time – I’m not sure anyone really does.  It feels like we’re more or less taking this one day/one step at a time right now.  This is something the transplant team here has never done before.
Yes, Emerson is okay this morning.  I just honestly don’t know how much longer she can keep it up & it makes me sad… my heart is heavy today.
Little Ashley survived ex-plant last night & is resting much more peacefully today.  Unfortunately now she is left without a bowel.  You cannot survive without a bowel.  She won’t die today, but she can’t live long like this.  The family is heartbroken but clinging to hope for a miracle.  That miracle would come in the form of a transfer to home, 6 months infection free on TPN, & approval to re-transplant.  Any way you look at it they are faced with difficult days ahead & sweet Ashley is gearing up for the fight of her life.  Literally.  Her spirit too, though, is strong.  Very strong.  God bless these precious little girls.
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Tired
Submitted by Erika on Sun, 08/01/2010 - 7:43pm.
Emerson has yet to move this weekend… at all.  She lies flat on her back & that seems to be the only position that brings her any relief.  We’ve scaled back on her pain meds, switching to an oral form (pushed through her feeding tube).  She still requires IV morphine, though, before all cares.  She complains of pain when she’s awake, but has been sleeping most of the day.  Her groin/lower stomach area is very swollen & for now there is no stoma to be seen.  The incision looks clean, but continues to ooze blood.  Nurses are changing the dressing often to keep it dry.  There is no urine draining from the new stoma yet – I assume the hole will open up as the swelling decreases.  For now all her urine is draining through a foley catheter placed through her urethra.  After surgery Dr. M said it would be 4-5 days before we start using the new vesicostomy site.  Today he said 2 weeks.  Eme is immune suppressed & her little body is tired – the combination of the two is slowing down her recovery.  I sure hope that’s all it is.
Tomorrow starts a new week with a new surgeon.  There’ll be lots to talk about as her antibiotic treatment has come to an end, but she still has plastic indwelling both in her blood & her bladder.  The choices we make now are huge.  If this infection comes back it could be the end… at best it will be ugly.  This is where my nerves kick in.  I’m scared, there’s no other way to describe it.  I hope we can come to a unanimous decision on how to proceed from here.
There’s so much more I could say, but I try to hold my tongue as much as possible.  I’m frustrated that the hole we’ve been dilating for 3 months was just closed – the process of dilating that hole cost Emerson 2 rounds of sepsis & several UTIs.  It is due to those infections that this bug has grown even stronger.  It is because of those infections that we now sit in such a critical position with this organism.  It’s no one’s fault.  The site couldn’t be used.  I’m just starting to feel like my daughter is a lab rat around here.  They poke & prod & cut… just to “see what happens”.  I would really like this to STOP.  If they want to know what’s going to happen, try it on a pig & we’ll talk about it if it works.  Not that I promote animal cruelty, but you know what I mean.  Let’s not try it for the first time on my daughter!
And to make things even worse, I came upon a resident today who wanted to stop/change around Eme’s meds (on a Sunday of all things).  It was the most heated discussion I’ve had with a doctor in a long time, if ever.  He, among other things, insinuated that we have made Emerson sick by putting her on too many medications (I'd love to see him try that theory out on Dr. L, the chief transplant surgeon & director of this program).  He even suggested we should leave Eme’s central line in until it becomes infected (with the strength of this bug, I kinda thought it’d be best to remove the line before it becomes infected!!).  It’s absolutely absurd.  He reads a lot of medical books, that was evident, but he doesn’t know anything about my daughter.  I could go on & on, but I won’t.  Luckily there’s no way the decision makers here would change any of Eme’s med.  They’ve been treating her for over 2 years now & they know what she needs.
I’m just tired… tired of fighting… tired of listening to my baby cry “ouchy”… tired of this infection… tired of the fear.  My head hurts.  I’ve had a headache all weekend & it won’t go away.  I really hope things come easier next week…
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Rough Night
Submitted by Erika on Tue, 08/03/2010 - 11:08am.
Emerson was awake & screaming from 2 - 3AM because….. I turned off Elmo.  Yep, Elmo.  She threw in a few “ouchies”, but I’m pretty sure it had more to do with the departure of her red, furry friend than it did any great amount of pain!  I thought she was asleep, but apparently one ear was awake & listening.  All that, unfortunately, put me in a tough spot – for one, 2AM is clearly past Elmo’s (& Eme’s) bedtime & for two, once she started screaming I definitely could not turn him back on.  I’m trying hard to teach her that screaming will NOT get her what she wants.  So yes, it was a rough night – for meJ!!
Emerson started sitting up yesterday & while she continues on scheduled pain meds through her feeding tube, she required fewer doses of IV medication for break through pain.  That’s a step in the right direction!  Today she’s sitting in a chair & playing with her doll house… her most favorite toy ever!  The swelling around her new vesicostomy is decreasing, although I still can’t actually see the stoma.  The NP passed a q-tip through the hole this morning & said she met no resistance.  That’s encouraging!
The surgeon on this week is a bit more aggressive than the others & wanted to pull her foley catheter today.  I think she needs one more day, so we agreed to pull it tomorrow & “see what happens”.  We’re all, obviously, hoping the new site will drain.  For now it is not.  Once we remove the foley, though, there’ll be no where else for her urine to go… hopefully this works!  I expressed my concerns to Dr. L & he said, indeed, it may not.  It “should”, but will it?  Only time will tell.  He reaffirmed this surgery was only possible because Emerson’s bladder is so “huge” due to her underlying disease process.  This surgery is not often, if ever, done this way simply because it cannot be.  If it works it spared Eme an even more invasive procedure.  If not?... don’t get me started.
The team has decided to continue Emerson’s IV antibiotics until all the plastic can be pulled from her body – bladder & blood.  Phew… I think she actually has a shot of staying infection free this time.  Wouldn’t that be something?!?!?!  I’m thinking we pull the catheter tomorrow, the vesicostomy starts draining (fingers crossed), she discharges this weekend, we stay in Omaha for 1 week to make sure everything continues to work properly, AND… we’re home for the start of the school year!!  WOW!!  Could it be???  Stay tuned…
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On The Fence
Submitted by Erika on Thu, 08/05/2010 - 3:35pm.
I’m not really sure how to interpret everything at this time.  Emerson’s foley catheter has been removed.  The site around her vesicostomy is still very sore & swollen (although improving) and the hole is definitely open.  It is not, however, always draining.  As a matter of fact it didn’t drain at all last night.  I set my alarm to sound every 2 ½ - 3 hours through the night & woke to cath her through the new hole.  Urine drained that way, but it did not drain on it’s own.  I was nearly ready to call it a loss (& pull all my hair out) this morning.
After a discussion with the team, though, they seem to be okay with the workings of Eme’s new stoma.  It’s positional (rather obviously).  When she’s lying on her back, which is how she always sleeps, urine won’t drain from the hole until her bladder is pretty full.  When she’s up & moving urine should drain much better.
Unlike before, I was told we’re no longer concerned about sitting urine in her bladder.  Before surgery sitting urine would build up pressure in her bladder.  That pressure would push the urine back through her ureters and into her kidneys.  Infected/colonized urine backing up into her kidneys was damaging & ultimately would have destroyed her kidneys.  Now there’s a hole in her bladder, though, & pressure cannot build up.  It doesn’t matter how much urine is sitting there anymore, all pressure will be released through the hole… draining or not.  Imagine a balloon – you can’t blow up a balloon that has a hole in it.
All this should keep the infections out of Emerson’s kidneys… that’s good.  How will it help to control the infections in her bladder though?  Sitting urine in her bladder will cause a UTI, and it will probably be this deadly klebsiella.  Do we use up the one remaining antibiotic treating UTIs?  Or do we choose to not treat them?  And is that even an option??  All really good questions, Dr. L said this morning.  In a nutshell he has no idea.  We’ll have to see how the first one presents & make a decision at that time.  Indeed, he said, she will continue to have UTIs.  Arrgghh!!!
Additionally, I’ve asked a lot of questions about what she can & can’t do now.  Answer – baths, okay… pools, okay… lakes & oceans, nope.  I’m working with a wound/ostomy nurse to try and find a pouching solution for this stoma so the urine will drain into a bag & not into a diaper.  It may or may not work.  The site is still too swollen to know for sure what the stoma is ultimately going to look like.
As suspected there’ll be no quick decision to abandon this approach.  Depending on how often & how involved her UTIs are, it may still be deemed necessary to remove her bladder completely.  For now, though, we’re going home & working with this for a few months.  We’ll just have to see how it goes.  There’s not much they’re doing for us here now.  Her foley has been removed & they’ll remove her central line tomorrow.  What we face now is trial & error until we can figure out how to live with this.  So, the plan is to discharge to the local area tomorrow.  We’ll stay in Omaha for at least one full week to make sure things continue to work properly.  After that we’re headed home!
I’ve made the decision to stay off campus this coming week.  As you know, we always stay at the Lied Center here in the hospital.  Tomorrow, though, we’re checking into an all suites hotel in downtown Omaha.  I’m really looking forward to a week with Eme all to myself.  We’ve been together for so long, but all our interactions have taken place in a hospital.  I’m really looking forward to some time with her out of this place.  I plan to get her hair cut one day, walk around the park another, & take a horse drawn carriage ride through the streets of the Old Market one night.  A little quality mother daughter time before we re-join the craziesJ!
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Hot In Omaha
Submitted by Erika on Mon, 08/09/2010 - 11:23am.
So sorry you haven't heard from me in a few days... my computer got a nasty virus last week & I had to take it in.  $115 & a full week with NO computer!  Yikes!!  I broke down this morning & bought a little netbook - I simply can't function without internet access.  All my interaction with the outside world happens thanks to a little thing called the internet.  I didn't know how much I relied on it until it disappeared!  So... bad news - I've blown my budget for the next several months, good news - I'm back online.
Emerson was discharged Friday night.  We checked into a hotel downtown & thoroughly enjoyed our weekend spent OUTSIDE the hospital!  It's been super hot here ("feels like" temps over 110 deg), so Eme's demands to "walk wide" took place at Target.  We spent most of the day there yesterday! 
Her stoma is draining urine, but is still very tender & sore.  I'm a little concerned but would guess it'll get better with time.  She's pretty weak from another 3+ month admission & although her stubborn self wants to "walk wide" everywhere, she asks to be picked "up" after 20 or so steps.  I'm both building muscles & breaking my back as a result... she's huge!
We were at the hospital for labs this morning & have a clinic appointment there Thursday.  If all goes well we'll be on the road back to Colorado Saturday morning... just in time for the start of school.  A lot can happen in a week, though, so I'm taking it one day at a time.  For today Eme remains outpatient & is doing well, all things considered :)!
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We're H - - - !!
Submitted by Erika on Mon, 08/16/2010 - 9:16am.
Sorry… things have just been crazy!!  Last week was very hectic trying to squeeze in visits with all our transplant friends, nurses, & others before heading home.  Emerson hit a few little bumps, but nothing majorJ.  We arrived in Colorado last night around 5pm.  We’re HOME!!  I have lots more to share, but am off to do some school supply shopping at the moment.  School starts Thursday & we’re busy, busy until then!  Check back in a few days!!
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Just To Clarify...
Submitted by Erika on Mon, 08/16/2010 - 10:27pm.
Ha… you might appreciate this – I just spent 20+ minutes composing a “reply” on the guestbook & the server recognized my email address as SPAM.  Hmmmmmm… & I am the administratorJ!  Anyhow, I lost my words, so before I lose my thoughts too I’ll post them here.
I wanted to take a minute & reply quickly to some chatter here on the guestbook regarding Ashley Kate.  To anyone who may not know it, Emerson herself transplanted twice & Emerson herself faced near certain death on several occasions.  As a matter of fact at time of ex-plant Emerson was actually much sicker than Ashley was.  She was in end-stage liver, kidney, & respiratory failure.  She was on 24-hour dialysis and had been paralyzed and on the vent over 2 months following an 8 minute code she was not expected to survive.  I am in no way attempting to ‘compare’ our situations, but say this simply to let you know I’ve walked in Trish’s shoes.  I will never pretend to know exactly what she needs or how she is feeling, but I believe I understand as well as anyone possibly could.  Having said that, the reason for my words – “she cannot survive without a bowel” – was only to emphasize the severity of the situation.  In pictures posted around that time Ashley looked ‘pretty good’, but looks can be incredibly deceiving.
Indeed it is critically important to have hope in times like this.  I am in regular contact with Ashley’s mom & in every conversation we have I express it.  I honestly believe Ashley can & will do this and have shared that with Trish many times.  As a matter of fact, in the same paragraph referenced above I said Emerson’s spirit is strong & that pulled her through.  I said Ashley’s spirit, too, is very strong & I believe it will do the same for her.  There is hope.  Of course there is.  I apologize if my words led you to think I believed differently.
In the end, Ashley is very sick.  The situation is serious & continues to intensify.  She desperately needs a break.  I, however, believe she can fight back from this.  I believe Ashley can do it… not because Emerson did, but because she is a strong little girl with a vibrant spirit… because her mommy & daddy would move mountains for her… because her brother’s & sister’s worlds revolve around her … because she is so loved & she knows it.  That is very powerful!  If you want to follow along on their journey &/or leave words of encouragement for Ashley and her family, here is the web address again:
http://ashleyadamsjournal.blogspot.com
No offense taken, I just wanted to clarify the intention of my words.
Beyond all that, let’s please stop the chatter regarding this & use our energy to blanket Ashley and her family in prayer instead.  I know words can be misunderstood, but I choose to believe anyone following our journey does so with good intent and a loving heart.  Please remember that…
Thanks, as always, for ALL your continuing support!
Erika
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Mission Accomplished!
Submitted by Erika on Thu, 08/19/2010 - 11:44am.
School supplies… check, annual physicals… check, closed toe shoes… check, mounds of paperwork… completed & signed.  The first day of school has arrived – 3 days to prepare & little sleep to be had, but (drum roll please)… I drove the boys to school this morning, helped Bradley get situated in his new classroom, met the new chef, talked to the school nurse, dropped off forms & checks, visited with a few parents… I DID IT!!  Mission Accomplished!!  I made it home for the first day of school – Collin’s first day of middle school & Bradley’s first day at a new school.  WOO HOOJ!
I paid a small price – only 3 ½ hours of sleep last night – but it was worth every penny!!  I was thrilled to share this important day with both the boys.  There was lots of nervous energy in the car this morning… I can’t wait to hear the stories this afternoon!!
And speaking of stories… you might be interested to hear all the things I’ve learned this week – a 10 pound mass of hair was removed from a woman’s stomach (yep), tequila poured onto stainless steel can form small diamonds, & scientists look for clumps of penguin poop from space to determine their breeding patterns – who knew?!?  Never a dull moment around here!
Emerson is doing pretty well, although she doesn’t want to walk much anymore.  Her feet (left one in particular) are turning in more than I’ve ever seen & her ankles are weak.  She had x-rays of both ankles last week which showed no acute injury, but multiple arrest lines on the lower portion of the main bones in each leg.  It basically looked like 5 or 6 deep fractures through each bone.  They can be caused by extreme illness &/or osteopenia – Emerson had/has both.  The team didn’t think this finding explains her current reluctance to walk, though.  She’s also complaining of a lot of pain & can only wear her braces an hour or so at a time.  Two months ago she was walking everywhere & wearing her braces all day.  I’m not sure what to make of it, but have requested an appointment with an ortho doc.  It may be disease progression, but I’m certainly hoping that’s not so.  In any case, we’re ordering a medical stroller for now.  She walks a little with her baby stroller for support, but mostly wants me to carry her.  I’ve already hurt my wrist & am breaking my back!  She’s not so little anymore!!
Emerson is thoroughly enjoying life with “Kai”, “Beet”, & “Lello” (aka Collin, Bradley & Bella, her white little Bichon).  She put “Lello” in her baby carriage this morning & took her for a little stroll – too cuteJ.  Bella stayed put the whole time… she loves all the attention!  Of course my camera was nowhere to be found.  I promise to grab it next time... I owe you all some new pics!
Eme has appointments at Denver Children’s Hospital & at the local pediatrician’s office next week – she, believe it or not, has never even met Emerson!  Collin has hockey try-outs.  There are parent nights at school for both boys – Tuesday for Collin, Wednesday for Bradley. I’m trying to find my way into a schedule, & it’s proving to be a challenge.  I’m anxious to get some home nursing support & hope that will help.  Life with three kids is hectic alone; add to that Eme’s cares & it’s a bit overwhelming!
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Blessed
Submitted by Erika on Tue, 08/24/2010 - 10:46am.
I found myself sitting on the deck Sunday morning… a coffee in one hand, Bella on my lap, Bandit at my feet.  The sun glistened over Pikes Peak in the distance while my 3 children played on the slide in our yard – Collin at the top with Emerson, Bradley at the bottom with his arms stretched towards her.  Giggles and grins abound.  Jim, high on a ladder with a paint brush in one hand & a bucket of stain in the other, was giving our tired, sun soaked play set a little face-lift.  I sat peacefully & watched it all… what a beautiful site.  I can honestly say THESE are the best days of my life – this past weekend, today.  THIS is it.  I’ve gained a few pounds over the past several years… many grey hairs & more than a few wrinkles, but they’ve been well earned.  I may not look the same as I did when this all started, not as young and certainly not as beautiful… but my spirit has never been better… my love and appreciation for life has never been stronger.  Don’t get me wrong – there are no fairies fluttering through our garden.  Two minutes later the boys were fighting – “push her NOW”, “let’s swing”, “come ooooonnnnnn”, “STOOOPPPP”… if you have children, you know the drill.  Nope life isn’t perfect, but it’s LIFE & I am loving every minute of it!
I don’t know how much longer we have with Emerson… I fear that should something happen to her the joy I felt this weekend will be lost to us forever.  I am continually reminded how quickly things can change in the transplant world – in a split second, when you’re least expecting it.  I know that ‘healthy’ today means only that – ‘healthy’ TODAY.  Indeed I don’t know what tomorrow will bring.  None of us do.  Will Emerson outlive me?  Will this last forever?  Probably not.  I’m not thinking about that today, though.  For today I’m only thinking about TODAY.
As I was driving to the grocery store Sunday afternoon a song came across the radio:
“I have been blessed. And I feel like I’ve found my way. I thank God for all I’ve been given at the end of every day. I have been blessed. With so much more than I deserve. To be here with the ones that love me. To love them so much it hurts. I have been blessed”
~ Blessed by Martina McBride
I couldn’t have said it better myself!  Indeed, I have been blessedJ.

Emerson had an appointment at Denver Children’s Hospital yesterday & we meet with the local pediatrician this afternoon.  In great news, she came home last night!!  It may have been the first time Eme’s ever been to TCH & avoided an admission!  At the end of the appointment the doctor said he was going to be very bold & schedule her next appointment out 3… months I said?!?!??  Are you crazy, he replied?  Nope… 3 weeks!  Wishful thinkingJ!  If she can actually make it 3 weeks, though, it would be a first!!  They’re referring her to the rehab clinic to address recent problems with her feet & ankles.  She was up several times last night crying in pain.  I have meetings scheduled with the local elementary school next week & if all goes as planned, Emerson will start pre-K Monday, September 13th.  WOW… hard to believe!

Check back later for more updates from all the appointments this week…
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Ahhhh... The Simple Things In Life
Submitted by Erika on Wed, 09/08/2010 - 1:15pm.
that’s what I’ve been enjoying lately... things I most certainly took for granted 4 years ago… things I surely never thought about before all this… things like – driving in the car with all three of my children, eating dinner at the dinner table, sleeping in my bed.  Things I’ve not been enjoying lately? – unpacking boxes (still sooooo much to do), time to myself (absolutely none), time to browse the internet (again none), television (I have yet to sit and watch a single program since I’ve been home)…  you get the picture.  Life at home with Emerson is BUSY.  Wonderful, yes, but really, really BUSY!  Add to that 2 growing boys & my life pretty much spins out of control most days.  When I left 3 years ago Bradley was still napping.  No more!  The boys are growing up & they don’t sit still for a second!!
For the most part, Emerson is good… not all good, but mostly good… & I think that’s about as good as it gets for her.  I’ll take it!!  We've been in & out of the hospital - liver appts, rehab clinic, infusions (sitting with her for a 4 hour infusion as I write), procedures, etc.  But, no admissions!!  I’ve been soaking up every day with her, though, as I know it’s only a matter of time before we're stuck here again.  She is so bright eyed & innocent (and independent & stubborn)… it’s really fun watching her discover the world!
I met with our home nursing rep yesterday.  She hopes to have at least 2 nurses in place by the end of the month.  And… in other BIG news – Emerson starts Pre-K on Monday!!  WOW!!  The transplant team is requiring either a parent or home nurse be present on campus with her at all times.  So it looks like I, too, will be starting school Monday (at least until we get a nurse in place)J.  She’ll go Mon – Thu in the afternoons.  There was much discussion as to whether or not she can ‘do it’ & I ultimately decided we’ll never know until we try.  So that’s what we’re going to do – try.  If she gets too tired then we’ll scale back.  For now, though, I don’t want to automatically assume she can’t hang in there with her peers.  Maybe she can, maybe she can’t – I’ll let her make that decision.  I desperately want to give her every opportunity possible to be a ‘normal’ little girl.  Let’s see what she can do – she just might surprise us all.  She certainly has before!!
I catch myself reflecting on the past 3 years every now & then.  Did it all really happen?  Did I really almost lose my daughter?  Are there really 2 families grieving the loss of their loved ones while my daughter laughs & plays?  Did those strangers save my daughter’s life??  Are their child’s organs living inside of mine??  It’s surreal.  It really, really is.  I’m at a loss for words most days, I just pinch myself to make sure it’s not a dream.  Indeed, Emerson is home & we are all living... together.  Praise God.  What amazing work He has done!
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Really? Honestly??
Submitted by Erika on Wed, 09/08/2010 - 4:16pm.
Enjoy the pictures, and then look down to read my latest entry… posted oh, about 3 hours ago.  Read that, and then read this.  It will clearly illustrate why parents of chronic kiddos never brag about good health…
Yep – Emerson’s being admitted as I write.  She spiked a fever to over 103◦ (39.5◦ & rising).  I’m hoping it’s just a reaction to the infusion, but… we pre-medicated before the infusion, and have now given her Tylenol & a large dose of steroids.  Still, though, her fever won’t break.  She’s jerking & shaking.  Is she seizing??  Maybe… her respirations are in the 70s & her heart rate is high.  Lots of activity here.  Welcome back to reality…
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???
Submitted by Erika on Thu, 09/09/2010 - 5:17pm.
…that’s more or less the consensus around here. The attending said “anything’s possible”, but she doesn’t think yesterday’s event had anything to do with the infusion – not a med reaction. She’s never seen an infusion reaction that severe, with that high of a temp. Add to it the fact that Emerson was pre-medicated to prevent a reaction & it doesn’t make sense. Blood work at the time also showed her to be acidotic with, among other things, high potassium. She was started on 2 strong IV antibiotics yesterday.
Overall Eme is doing okay today – no more fevers, but her blood pressure is low & her eyes are sunken. Her urine culture looks clean & nothing has grown back yet in her blood – that’s all good. So what caused this? No one knows…
The struggle this admission has been IV access – no big surprise to those of you who know her. They placed yesterday’s IV in the one access point we have for weekly lab draws. It’s an okay spot for a short infusion, but is too risky to keep for any length of time. If we lose that site, there’ll be no way to draw weekly labs. Well, after she tanked they opted to keep the IV because there simply were no other options. She lost it this morning. She lost the IV. I’m praying she didn’t also lose the site. Several people were called up to “look” for other options & every one of them winced when I suggested placement in her abdomen &/or chest. No one here had ever done that & no one was willing to try. An infusion nurse finally got an IV in her shoulder, but we’ve been having trouble with it all afternoon. After this there is nothing. No one else will even try.
She needs this IV for 1) antibiotics until we can rule out a blood infection – 24 more hours & 2) anesthesia for J-tube placement tomorrow. Believe it or not, they’re unwilling to replace her tube without anesthesia. Her anatomy is different & everyone is uncomfortable treating her without maximum precautions. So… it was suggested to me that she might need a trip to the OR for a central line. However, I will not consent to a central line for the placement of an NJ tube. It does not require anesthesia. They are uncomfortable with her, I get that. I know, trust me – most who read through her chart won’t touch her with a 10-foot pole. However, as a PICU doc in Omaha once told me, “there are no free lunches anymore”. Everything we do to help has an equally undesirable side effect. If we continue to place & pull central lines she will soon be out of access there too. Without both peripheral & central access there’ll be no way to keep her alive when she gets sick. We could very realistically be there in the next 12 months. It’s scary. We have to think about this now. The doctor today said to expect an IO this cold & flu season (a needle shoved into her bone for emergency IV access). I was also told to expect shattered bones & lengthy rehab as a result. Due to Emerson’s underlying bone condition an IO could potentially be very damaging.
So what do we do?? Again, no one knows. Everyone recognizes where we are, but there are no good or easy answers. I’ve asked them to all think outside the box. Can a surgeon shunt open a vessel for peripheral access? Maybe it’s never been done, but could it be? We need to think about these things now… before we’re in an emergency situation.
In the end… if Eme’s shoulder IV holds up overnight & if the cultures remain negative, she’ll go to fluro for NJ-tube placement tomorrow morning & may be able to discharge late tomorrow afternoon. If the cultures grow anything she’s here for 14 days on antibiotics & if she loses the IV the procedure will be cancelled & we’ll have to come up with a new plan. That’s where we sit.
All in all Emerson looks okay today. Not great, but not bad. She turns 4 on Sunday & has yet to celebrate a birthday outside hospital walls… I’m bound & determined to break that cycle this year. Come on IV… we need 24 more hours!!
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A Birthday Blessing
Submitted by Erika on Sun, 09/12/2010 - 7:06am.
Emerson discharged yesterday!  I’ll catch you all up on what’s happening tomorrow, but for today we have a birthday to celebrateJ!!
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Picu
Submitted by Erika on Fri, 09/24/2010 - 5:12pm.
Emerson is in the PICU & on pressers (blood pressure support medication).  The last time she required pressers was after the code 2 years ago.
We were at the hospital yesterday morning for a scheduled GI appointment.  Emerson has been extra lethargic this week, but I attributed it to the start of Pre-K & didn’t think much of it.  She arrived in clinic yesterday, though, very out of sorts – spacey, slow, weak – definitely not herself.  The team was concerned.  They sent her down for labs & asked that we stay at the hospital until the results were back.  We went to the cafeteria & she passed out – head hit the table, fast asleep.  I talked to the team & we headed straight to the Emergency Room.
She went from pale to grey & her blood pressure started to fall.  After 2 fluid boluses & a massive stress dose of steroids her blood pressure fell to 70s/20s.  They started dopamine in the ED.  She was transferred to the PICU last night where they placed a femoral line.  Her dopamine requirements doubled over night.
She has stirred only a few times today.  She will open her eyes briefly to ask for a cracker or water, but will fall asleep again before I can get it to her.  She is pale & her eyes are red.  She looks awful.
Her labs don’t look nearly as bad as she does.  There is no obvious infectious process brewing & blood cultures remain negative at 24 hours.  She does have elevated segs & a high sed rate – both infection markers, but everything else looks "okay".  Bottom line… something is very wrong, but no one has a clue as to what it is.  Typical.  Very frustrating.
Equally as frustrating are the docs who think it’s great she’s only had one other admission in the past month.  Really?  Great??  Let’s just say this isn’t what I had in mind when we consented to transplant 2 ½ years ago.  I'm beginning to wonder if this really is just her (our) life & it makes me very sad.  I had hoped for so much more...  
On a positive note, Emerson’s angels continue to work their magic - it’s amazing, but Emerson has yet to crash at home.  It’s unbelievable really.  It ALWAYS happens when we’re in the hospital and medical attention is near.  Thank God for that!
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Saturday
Submitted by Erika on Sat, 09/25/2010 - 9:52am.
First I have to get a few things off my chest… living with a chronically ill child is hard, so much harder than I ever could have imagined.  The team here in Denver is great.  I have no reservations about their competency or their ability to care for Emerson.  However, despite frequent comments to the contrary I have not earned my MD over the past 3 years & no, I have not earned my RN either.  What I believe I have earned, though, is the right to be involved in my daughter’s care & treatment plan.  With the possible exception of the team in Omaha, I know her better than anyone.  Period.  I know how her body reacts to illness, I know how she best recovers, I know what is “normal” for her & I know what is not.  I don’t believe myself to be “just a parent”, rather I believe myself to be an informed, knowledgeable, competent caregiver.  I’m tired of having to advocate so hard though.  Really, really tired…
Emerson started to perk up a bit last nightJ.  She sat up, asked for “Apple” (aka, Strawberry Shortcake), & even took a little sip of water.  All good stuff!  They weaned her dopamine a little yesterday but had to go up again last night after a series of soft blood pressures.  The night nurse, then, took it upon herself to turn off the dopamine completely at 3am.  Eme’s pressures were low off the drug, but the apparent strategy was to watch & wait (I’m guessing… this all happened while I was sound asleep).  As I could have predicted, it has set Emerson back yet again.  This morning, after a brief period of alertness, she is looking awful again.  She is pale, her eyes are red, & her pressures are low.  They just restarted the dopamine & are getting ready to hang fluids and albumin.
There’re still no great clues as to what’s going on.  Her labs are a little out of whack & her lactic acid is elevated.  The best working theory right now is viral sepsis.  She should have a fever with that, but it’s possible due to her weakened immune system she’s not able to mount one.  She had an echo which showed good heart function & an ultrasound of her kidneys which looked normal.  She also just finished a 24 hour EEG & I’m waiting on the neurologist to learn those results.  She’ll stay in the ICU until they can successfully wean her off the dopamine & she can maintain acceptable blood pressures on her own.
The big gun antibiotics should be stopped today assuming blood cultures remain negative for bacterial infection.  My current hope is to wean her off the dopamine & take her home.  I have little interest in staying here until things look “perfect”.  When she gets to a point where she’s stable on the monitors off IV meds I want to leave.  We can finish the course of whatever this is at home.  I am standing very firm about that & have expressed it to the team several times already.  If we always stay until Emerson is back to her baseline we’ll very likely live the majority of our lives in a hospital.  We’ve done that… we can’t do it anymore.  Wow how things have changed – there was a day I never would have considered leaving with her looking like this.  I would have fought hard for answers.  We’ll never have them, though – I’ve learned that & am coming to accept it.  I just need to take my baby home where she belongs…

I should have time today to post some birthday pics - check back later!

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Sunday
Submitted by Erika on Sun, 09/26/2010 - 11:10am.
Not a lot new to report.  Emerson crashed again last night, on dopamine, with blood pressure means dropping to the 30s.  She went from alert & engaging to out in seconds.  She was non-responsive until we were able to increase the dopamine enough to elevate her pressures again.  There is still no good clue as to what’s going on & tests continue to return negative for infection.  Her ostomy output is up (albeit not super high) so today they’re adding rejection to the mix of possible causes for all this.  There’s also the possibility of dysautonomia (autonomic nervous system dysfunction) which could point to progression of her underlying metabolic disease.
In rounds yesterday the PICU doc made a specific directive to use measures other than blood pressure alone to determine the need for increases in Emerson’s dopamine drip.  He was referring specifically to the episode the night before (turning the drug off) & the quick reaction to restart it when her pressures plummeted.  I told him (with all due respect) the drug never should have been stopped in the first place & she was not ready to do this on her own.  He said… let’s run the tests.  Long story short, they did & he walked in just a few minutes later to say – “you were right”.  He told his team the same.  Her lactate had increased markedly over the last draw, which means she was not profusing her organs well… i.e., her blood pressure was too low & she was getting into trouble.  Indeed, the drug never should have been stopped.  I knew it – the change in her clinical appearance was alarming.  She’ll tell you when something’s not right… you just have to watch.  I do that.  I’m with her 24/7 & have been for years.  The Liver doc joined the PICU team for rounds this morning & said, in his own words, “this is not ficticious, it is very real… something is wrong”.  All shook their heads in agreement.
Her lactate levels have come down a bit back on dopamine, but are still elevated which means something, indeed, is not right.  What’s not right remains the million dollar question.  For now attempts to wean the dopamine have been put on hold as she continues to tell us she’s not ready to do this on her own.  Emerson will remain in the PICU until she’s able to safely maintain acceptable blood pressures off dopamine.
The team here is talking to Omaha today in regards to possible rejection.  They’ll scope her in the next 24 hours, & there’s also discussion about starting treatment today regardless… just in case.  We’ve been running her anti rejection levels low to prevent infection, so there is cause for concern.  I’ll continue to keep you posted.
As for me, I’m sick to my stomach… my bowels are a mess, I feel like I’m going to vomit – the usual PICU admission.  This one, especially, has me a bit worried as I’ve never seen Emerson do this before, & until we know what’s causing all this we’re basically treating nothing… & Emerson’s not improving.  I hope beyond hope this will resolve on its own, but my gut tells me something may be very wrong.  Add to that the fact that we finally got a great home nurse in place (Thursday was her first day – spent with us in the hospital, go figure) & I’m extra upset.  If this proves to be a long admission she’ll have to find another family to work with & we’ll be back to ground zero.  I’m not sure, actually, how we can ever keep a quality nurse employed with Emerson’s unpredictable schedule.  Oh… & I have a class scheduled to start tomorrow myself.  And after two days at school last week the district has implemented a route & hired a driver to transport Eme & her nurse to & from school starting tomorrow.  What happens to that?  Our lives right now are just so out of our control.  I can’t plan anything.  I can’t look forward to anything.  I can’t sign up to volunteer at the school carnival.  I can’t commit to a simple lunch date or a doctor’s appointment for myself.  I’m missing Collin’s first hockey game today.  I’m trying so hard to find quality of life… for Emerson, for the boys, for our family, for myself.  But I can’t.  I don’t know how to live like this anymore.  And if it does wind up to be rejection we’ll be on a plane back to Omaha next week… then what?  I can barely even let myself go there.
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Monday
Submitted by Erika on Mon, 09/27/2010 - 2:57pm.
New day, same story… Emerson remains in the PICU on pressors.  She is feeling a bit better today as they haven’t decreased her rate in several days.   A few episodes of weaning the drug, crashing, passing out, elevated lactates, etc. definitely took a toll on her.  Today she is more awake & even chose to recline in the chair (her first time out of bed in 5 days).  Still, though, we are no closer to having any answers & Emerson is no closer to getting out of here.  As long as she remains on pressors she remains in the PICU.  Period.
There have been several lengthy discussions with Omaha in the past 24 hours.  Rejection continues to rank high on the list of suspicions.  She’s scheduled for an intestinal scope & biopsy tomorrow.  Of additional interest are the results of a CT scan done yesterday.  It showed an increase in the number & size of lesions on her left transplanted kidney – you may remember we’ve been watching that kidney for about 6 months now.  The team has been back & forth as to whether or not they should biopsy it… it is “floating” amongst her transplanted bowel & needle biopsy carries significant risk for bleeding and/or perforation of her intestine.  At the moment they’ve decided it’s too risky.  Finally, they’re adding an additional endocrine steroid to better address her Addison ’s disease.
Bottom line we still don’t have any answers.  Emerson’s not any worse, but she’s not any better either.  She remains on the same dose of dopamine she was admitted on last Thursday afternoon & her pressures (on the pressor) remain marginal at best.
I’m hanging in there… thanks for all your messages of support.  I read & re-read them all – each one fuels my spirit as we continue to navigate our way through this long & uncertain journey.
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Tuesday
Submitted by Erika on Tue, 09/28/2010 - 9:39pm.
Midday today I was gearing up for a positive post… but it was not meant to be.  Not yet anyhow.  They started a slow wean on Emerson’s dopamine last night & her blood pressures hung in there most of the day.  The drug wasn’t turned off completely, but its infusion rate was low.  Sadly she crashed again this evening & the drug is now back higher than it’s been in days.  As has been the typical presentation, she was up talking & watching TV one minute, and then passed out cold the next.  Her eyelids fluttered & her eyes rolled back in her head.  She was non-responsive & unarousable.  We increased the dopamine, her bps slowly rose, she stayed out of it for about an hour, then she “woke up” like nothing happened & went about her evening.  It’s become a very familiar routine.
Findings today:
1.       Abnormal 24-hr EEG:  “consistent with diffuse encephalopathy”. (encephalopathy is defined by Wikipedia as a “disorder or disease of the brain… a syndrome of global brain dysfunction”)
2.       Abnormal intestinal scope:  large red, inflamed nodules located at the top of the intestine. (awaiting biopsy results for further information)
Plan for tomorrow:
1.       Neurology consult to review EEG & to explore autonomic dysfunction as a cause for hypotension.
New thoughts:  None.
I saw a dim light at the end of the tunnel today, but again the light has gone out.  We’re back to square one.  It’s been nearly a week & we’ve gotten nowhere.  I have no idea what direction this will go or how long it will take to get there.  Tomorrow’s a new day, I can only hope & pray for a new something – a new set of eyes, a new test, a new thought… I’ll take anything.
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Wednesday
Submitted by Erika on Wed, 09/29/2010 - 7:28pm.
Here’s what I learned today:
1.       Intestinal biopsies:  Looked good – no sign of rejection!!
2.       Abnormal EEG:  Encephalopathy is consistent with severe hypoxia (lack of oxygen to the brain) & almost certainly happened during her code.  The damage seen to her brain will likely not progress but it won’t improve either.  Bottom line, Emerson sustained a brain injury & it is what it is.  It may explain some of her developmental delays – esp speech - & it may become more prevalent as time goes on.  There is no treatment.
3.       Autonomic Nervous System Dysfunction to explain hypotension:  that’s a cardiology consult & they were too busy to see Emerson today.
That’s it… 24 hours & that’s IT.  Needless to say it was a slow day in Emerson’s PICU room today.  I’m going out of my mind with boredom.  I really wish things would move a little quicker around here, we have a life to live (outside these hospital walls)!
In encouraging news, they were able to wean the dopamine a bit today & may even try to turn it off tomorrow.  That’s great, but don’t cheer too loudly.  We still have no idea why she continues to pass out with low blood pressures & we can’t go home until we get this sorted out.
Still hoping & praying for something… maybe tomorrow.
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Thursday
Submitted by Erika on Thu, 09/30/2010 - 10:20pm.
It was a rough morning.  Not for Emerson… no changes with her.  It was a rough morning for ME.  It was that morning when the gravity of the situation hits me, when the issues of the current admission settle enough that my mind has time & space to wander… wander to what’s really happening.  The fact is that most hospitalizations now end with a new diagnosis & a new specialist.  I honestly don’t know how much more Emerson’s little body can absorb.  Add to that the frustrations of being back in a PICU, in a teaching hospital, & a few choice comments from people who clearly don’t know Emerson, her history, or our situation & it all came crashing down on me this morning.  I respect everyone working here… I really, really do.  I trust them all implicitly with her care… I really, really do.  I just can’t accept someone who doesn’t know her coming in & telling me how it should be.  Let me assure you that with Emerson things are never as they should be.  It may have something to do with the fact she’s had 8 organs transplanted in her short life… whatever it is, though, she is very unique.  I also can’t accept being told that hospitals are “a dangerous place for immune suppressed children”.  Duh… I know that.  I don’t want to be here.  Trust me.  If we could manage this at home we absolutely would.
Add to that much more & it prompted me to write a long post this morning… it was personal & it was honest.  It was not directed at any one in particular & it certainly was not meant to point out problems at this hospital or any other.  It was simply a glimpse into this world – this ugly, painful, difficult world we find ourselves living in.
Just as I was getting ready to post that entry, though, a member of the transplant team stopped by.  She stops by often & did so this morning with a quick message from the doc in Omaha.  She must have sensed my mood, though, & although she clearly had other places to be she stopped to talk.  We talked about some pretty big, difficult things & I shed some pretty big, crocodile tears.  She said that as long as I ask them to keep treating Emerson they will.  As soon as I want to take her home & just love her for as many days as she has left they’ll accept that too.  She said they’ve done everything medically possible to help her.  They’ve pulled out their biggest guns.  What we’re left with now is putting out fires, & they’ll do that for as long as we want.  But when the time comes to stop they’ll understand and support us through it.  I’m not there yet… no question.  I’ve been fighting for Emerson for 3 years now & don’t know any other way to do this.  I’m not ready now, but maybe one day will be.  I just know we can’t live like this forever.  We can’t survive in a hospital.  Our family can’t survive us living in a hospital.  On top of that, we’re faced with some big decisions now… decisions that carry potentially life-altering &/or life-limiting complications.  Nothing comes easy anymore – everything we do has potential benefit, but also huge risk.  She helped me think through the different scenarios & put them into the context of my greater goal – quality of life.  She came in just exactly when I needed her… the right person at the right place at the right time.  Thank you God for putting her at our door this morning.
Then… one of our most wonderful & beloved primary nurses from the floor drove in (on her day off) just to see Emerson & to take me to the cafeteria for lunch.  She could have stopped by before or after her shift one day, but rather came in on her personal time.  I was very touched & think the world of her.  Another angel sent to us on this difficult day.
Then… Emerson had a terrific nurse today who unexpectedly walked into a mother with lots to say.  She listened patiently & validated all my concerns.  She then went to the appropriate people & “righted” each one.  She did so in a gentle, non-threatening way that got everyone’s attention.  I needed her today.
Then… our favorite night nurse is back tonight & I just found out she signed up to be Emerson’s primaryJ.  We have several primaries on the floor, but don’t know the PICU team here as well.  I was happy to know she likes us as much as we like her & thrilled to know she’ll be caring for Emerson often.  Eme’s definitely in great hands (& mom’s mind is at great peace) when she’s here!
So, in the end yes – there are definitely difficult, frustrating, nearly impossible aspects of living in a hospital.  The politics are infuriating, the bedside manner is sometimes difficult to digest… not to mention the fact that here you share ONE bathroom with parents from 25 other hospital rooms, ONE shower with parents from 3 ICUs (PICU, CICU, NICU), they never turn the lights off, & you sleep on a piece of wood.  The overwhelming reality, though, is that this place is filled with some of the most wonderful, caring, compassionate people you’ll ever meet.  They honestly love children & have been called to carry the burden of so many.  Their hearts are larger than life.  So, I decided to keep this morning’s entry to myself.  I’ll go back to read it someday & I’ll understand every word, but I don’t want to risk that any of you might not.  It’s not always pretty, but it’s our life, & it’s not always good, but the good so outweighs the bad.  Indeed we have been blessed on this journey… blessed to cross paths with some of the most remarkable people you’ll ever meet.  Thank you God for bringing them all into our lives!

 

In Emerson news, & in sharp contrast to yesterday, there was lots of activity here today.  We met at length with Cardiology, Neurology, & the PICU Attending.  In the end the general, widely accepted conclusion is that Emerson suffers from Dysautonomia (a disorder of the autonomic nervous system).  In simple terms, the autonomic nervous system controls our “unconscious” body functions such as heart rate, breathing patterns, blood pressure, etc.  When it malfunctions our bodies are unable to sustain appropriate function.  It’s a vastly wide diagnosis with varying degrees of severity.  I was told Emerson’s presentation is highly unusual & very extreme.  There is no cure for Dysautonomia, & one is left treating only the symptoms of the disease.  Cardiology will follow her now for heart rate & blood pressure instability.  A pacemaker was discussed for possible consideration in the future.  In addition to that & meds, it’s found that people with this disorder struggle with salt & fluid balance.  So, Emerson will start on a routine of daily fluid boluses, we’ll add saline to her formula, & she’ll start a new medication this evening.  The plan is to turn her dopamine drip off about 2 hours afterwards & “see if it works”.  If not we’ll turn the dopamine back on & adjust the medication tomorrow.  It’s basically trial & error from there.  The med they put her on is actually not used in children so there are no clear dosing guidelines for her weight.  As for plans to discharge, she’ll need to string together several days in the PICU off pressors & on this new regimen with acceptable pressures before they’ll let her leave.
In the end, I’ve been doing some reading on Dysautonomia & honestly think it explains more than just Eme’s current condition.  It actually could explain a lot of her otherwise unusual ways…. she sweats when she shouldn’t, doesn’t when she should, etc.  It’s a difficult disorder to manage, but at the end of the day it’s always best to know what we’re up against.  There are great minds at work here & I’m confident they’ll figure out something.  Additionally, the decision has been made to keep Emerson’s central line in place long term.  It makes me very nervous, but she needs to prove she can stay healthy for longer periods of time before we pull the only access she has.  I know the risks… I know she harbors a deadly infection inside her little body… & I know a line gives that infection a place to attach and grow.  I know how devastating that could be.  As I said before, though, we are out of good options for Emerson.  I believe this is the best of those currently on the table & it also gives us the ability to treat some things at home, thereby (hopefully) avoiding so many frequent hospital admissions.  We’ll protect the line as best we can.  Finally, Eme’s potassium has been running low & she’s requiring regular IV replacements.  Not sure why, but we’ll have to get that sorted out too.
Until tomorrow…  God bless & good night!
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Dysautonomia
Submitted by Erika on Fri, 10/01/2010 - 10:39pm.
I lay here tonight trying to sort through the reality of this latest diagnosis & what it means for little Emerson.  My mind has been racing all day… so many questions, so many thoughts.  It is a very rare disorder – there are few people who have ever seen &/or treated it & there is not much information available online.  In searching through articles & talking to a genuine expert (thanks for the chat Lisa – your words were invaluable!), I couldn’t believe my eyes.  Could it be I’ve stumbled upon the Emerson White disease?  It is the story of her life.  I’m quite certain I could wipe out half her current diagnoses & replace them all with this one – Dysautonomia.  Symptoms include bladder dysfunction (check), gastrointestinal dysmotility (check), cyclical vomiting (check), excessive &/or complete lack of sweating (check), osteopenia (check), wide swings in blood pressure (check)… and the list goes on.  Emerson fits almost every single aspect of this disorder.  It’s crazy!!
So naturally I got all excited today.  Could we finally have an answer for everything?  How are we going to manage this?  Is this the key to giving her a life?  Is this the key to keeping her out of the hospital?  If we know what we’re up against & if we treat it, then surely things will improve… right?  Wrong…
The disease is progressive & the long term statistical survival rate is not good.  Add to that the statistical survival rate for multiple organ transplant (times 2) & little Eme’s chances don’t look so hot.  There is no cure, you can only treat symptoms.  Crisis’ can occur at any time & throw the body into a tail spin it may or may not ever recover from.
Still, though, my mama bear instinct kicked into high gear today & I wanted to know everything I could about this.  I learned who the experts are & emailed them both (yep, only 2).  They both replied… one more helpful than the other.  I talked at great length to another mother who also has a child suffering from Dysautonomia – amazing, really, that I even know of anyone given the rarity of the disease (gotta love the World Wide Web!).  I talked to doctors, nurses, the transplant coordinator… light bulbs going off left & right.  She needs this, she needs that.  Doctors disagree, but I fight… I share what I’ve learned… I beg… let’s try it…
I go, go, go.  Then… STOP.  Yep… STOP.  This I KNOW I can’t do.  I cannot start a new fight for Emerson.  I don’t have it in me.  I’m tired of advocating.  I’m done.  So tonight I have a new approach to this new information… it is what it is.  Period.  A new diagnosis to add to the long list of others & we’ll treat it how the docs here best see fit.  I’m not traveling across the country to see a specialist.  I’m not arguing with PICU docs about her need for IV fluid.  I’m not trying to convince everyone to try one more drug.  I’m not doing it.  We’ll continue to manage all her other disorders as we always have – it was working.  We’ll add this one & manage it the best we can too - with the docs here in Denver.  The Cardiologist involved has done some research & is very eager to help.  The decisions she’s made so far this admission have been good ones.  Emerson’s blood pressure is being controlled now off dopamine.  That’s huge.  Are there other things that could be tried?  Probably yes, but I’m not fighting for them.  Emerson is stable but not perfect.  She’ll never be perfect.  I’m done fighting for it.
At the time of Emerson’s first transplant (over 2 years ago) I made the conscious decision to stop searching for answers.  It didn’t matter anymore.  The grueling cycle of testing for this, biopsying that, etc. had taken its toll.  Results were always abnormal but non-specific, always leading to another round of testing for something else.  In the end it didn’t matter.  There is no cure for any of this stuff.  There is no magic pill.  I refused at that time to live my life consumed with the need for an answer that wasn’t going to change anything anyhow.  I committed myself at that time to get Emerson the help she needed & to live our lives.  It took a long time to get to that point… but that’s where I landed.  Why should things be any different now??  The truth is they are not.  I don’t need to solve this.  I don’t need to know all it explains.  It doesn’t really matter.  Let’s address her dopamine dependency & increased potassium needs and let’s get out of here.  Let’s go home & live our lives.  And that’s what we’re going to do.
In the end, I'm not the one to further the cause of the disorder.  I’m not the one to educate the medical community or to provide support to others facing this rare disease.  I’m not the one to bring public attention to its cause.  I’m the one whose daughter battles it, that's all… amongst many other things, she suffers from Dysautonomia, a little known disorder affecting her ability to regulate her core body functions.  I’m the one whose daughter lives with it.  And that’s what I intend to do with this newest information… just live.
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Quick Update
Submitted by Erika on Tue, 10/05/2010 - 12:41pm.
Still in the hospital…trying to balance out Eme’s electrolytes & figure out how to add 6 new meds + formula changes to her already crazy schedule.  It’s really, really insane.  There’s a care conference tomorrow with all the many specialists now caring for Emerson to discuss this newest diagnosis.  Home nurse resigned this morning (sniff, sniff)…
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Friday Update
Submitted by Erika on Fri, 10/08/2010 - 9:51am.
STILL in the hospital… finally getting a handle on Eme’s electrolytesJ… her broviac (central line) somehow migrated out of place inside her, though, & she’s going back to surgery for an attempted fix this afternoon.  Apparently it’s “very concerning”, but no one knows why – it just is (???).  She has a new heart murmur now, is her blood flowing in the wrong direction??  Who knows… I was just told it pretty much never happens with this type of line (which explains exactly why it happened to Emerson – indeed she does things in her own unique way!)
The care conference went as well as could be expected.  We talked about the new diagnosis, new meds, etc.  We also talked about where this is all going &, while difficult to hear, there were no big surprises.  The main message from Emerson’s head doctor was to enjoy the time we have together & make everyday count.  It’s time to readjust our expectations for her – things are probably not going to improve.  We talked about how to find quality of life through all this & how to maximize our time outside the hospital.  There are no clear answers… I know that.  In the end we all want the same things for her, though, & that’s reassuring.
The care conference ended with a strict directive to me – they told me I HAVE to take advantage of the time Eme is in here to be with Jim & the boys.  On that note, they pushed me out the door for the evening with orders to not return till morning!  I begrudgingly obliged… after a manicure, pedicure, dinner with the boys, & a full night’s rest in my bed, though, I was thankful for their persistence!
Emerson’s anxiety level is at an all time high – attributed, in part, to this new diagnosis.  The non-stop screaming is honestly unreal.  She’s being referred to the infant mental health program here.  She’s currently on scheduled Ativan, but it barely touches her.  If we can get a better handle on this it will go a long way towards improving quality of life!  I’m seriously at my wits end & am finding it difficult to enjoy time with her right now.  Otherwise, she spiked a temp this morning (which I’m hoping we can all pretend didn’t actually happen) & she’s scheduled for surgery this afternoon.
Collin has a hockey tournament in Breckenridge this weekend & I’m pushing really hard for discharge this afternoon so we can attend.  Fingers crossed!!  We’ll be back one way or another soon enough… please just let us have this weekend out!
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So Close...
Submitted by Erika on Fri, 10/08/2010 - 9:53pm.
but again, not meant to beL.  Eme’s surgery went well – it was “difficult”, but they were successful.  I drove home to grab Bradley & my mother-in-law (in town for the weekend from Connecticut), drop the dogs off at the vet, pack our bags… then headed back towards the hospital to grab Emerson and drive up to Breckenridge for the weekend.  I walked into her room to find a very pale little girl with dark circles under both eyes, sound asleep.  We proceeded to pack things up but she never flinched.  Bradley talked to her… nothing.  Grandma talked to her… nothing.  We took a blood pressure &... you guessed it – in the toilet… low… numbers that put her in the PICU on pressors 2 weeks ago.  Everyone scrambled… residents called fellows, fellows called attendings – the usual drill. 
Needless to say she’s not going anywhere.  Collin’s reaction to all this drove a stake right through my heart.  Why do I continually have to make these impossible choices?  What is happening to my sweet baby girl?  I feel like her little body is breaking… right before my eyes.  It’s getting harder & harder for her to recover from anything.  I drove Bradley & my MIL up the mountain and came back to stay the night at the hospital.  Collin has an 8:30 hockey game tomorrow morning.  I’m planning to wake at 6, drive up for the game, and then return to the hospital (hopefully in time for rounds).  And the saga continues…
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Road Warrior
Submitted by Erika on Sat, 10/09/2010 - 4:37pm.
Emerson passed out again last night – another episode of low blood pressures.  Cardiology doubled the dose of one of her new meds & ordered several fluid boluses.  The PICU team was on alert.  Her pressures came up a little, although stayed marginal most of the night.  Still, though, marginal was enough to keep her out of the unit.  She spiked a fever this morning & has been febrile most of the day – heart rate in the 170s.  The team ordered blood cultures & has started several IV antibiotics.  She’s back on all IV meds, including stress dosing for her adrenal insufficiency.  And we were so close to getting out of hereL…
I can’t tell you what’s going on, but I don’t think we have a good handle on this new diagnosis yet.  I woke up early & drove to Collin’s game in Breck (a 2 hr drive from the hospital), then turned around & drove back afterwards.  I’ve spent the afternoon with Eme & am getting ready now to drive back up the mountain for the night.  Collin has an early game tomorrow morning – I’ll return to the hospital after breakfast.  LOTS of driving this weekend… I’m exhausted!
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Klebsiella
Submitted by Erika on Mon, 10/11/2010 - 8:40am.
It’s BACK - heart rate in the 170s+, fevers, blood pressures all over the board.  Eme’s main doctor is on service this week (a great thing).  Just finished rounds:
•         Passing out last week? – Further evidence of disease progression.  Bad news.
•         Fevers this weekend? – Klebsiella (only in the urine for now, but she has a central line)
•         Klebsiella? – Gone resistant to last antibiotic.  Trying cousin drug & researching efficacy of different drug combinations.  Bad, bad news.
•         2 pound weight gain over the weekend? – 3rd spacing (fluid leeking out of her blood vessels & into her tissues, can happen with infection) & steroid cushion.  Tapering steroids today.
She looks remarkably well considering all that’s going on in her little body… she’s grown so accustomed to feeling sick.  If the Klebsiella moves into her blood, though, things will look very different around here.
I’m not so sure I’ll consent to her leaving with a central line anymore.  It’s been bad for a while, but we’re truly on our very last leg (& quite possibly the very last infection) with this organism now.  Things are going from bad to worse this admission… the doctor, head hung low, agreed.  I fear she’ll die from a Klebsiella infection… the doctor said nothing.  I don’t see how we’ll ever get her out of here… the doctor said we will.  We’ll get her out.  I trust him – he’s remarkably intelligent & he loves my little girl.  I sure hope he’s right.

Thanks for looking out for me this weekend!  Indeed, it was a crazy one!!  I made the drive between Denver & Breckenridge 6 times in 48 hours!  Jim wanted me to come home for dinner last night, but I had to say no... 2 more hours on the road would not have been a smart idea.  We had a great time in the mountains, though, & even had a chance to do lunch and a little shopping together yesterday.  It was a beautiful weekend - a little chilly, but sunny!
Collin's team fought hard this tournament, but sadly pulled off only one victory.  Saturday's opponent was very physical & yesterday's team was big!  They skated hard, though, & all put forth a valiant effort.  I really, really love watching them play.  They are all unbelievably talented... I honestly think most of them (Collin for sure) can skate better than they walk!  It's pretty amazing!
I wasn't thrilled with all the decisions made for Emerson while I was away, but everything is back on track this morning.  I'll update again soon...

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Soooooo Frustrating!
Submitted by Erika on Thu, 10/14/2010 - 9:06am.
Emerson remains in the hospital.  Good news?  She looks good & her blood pressures are well controlled on the new medication.  Bad news?  She can’t break these fevers & accompanying tachycardia (fast heart rate).  She’s also oxygenating a bit low (88 – 90%) & has periodic episodes of fast, shallow breathing.
Now… when I say she looks good, let me give you a visual – for the second admission now, they’ve put Emerson in a pediatric bed (as opposed to a crib).  She recently discovered what all the little buttons on the side of the bed do.  Her new favorite afternoon activity? – Putting the head of her bed up, crawling to the top of it & “sliding” down (with full sound effects… “wheeeeee”)!  As I said, she looks good!
But… she continues to spike fevers – 102◦+ - every morning with a heart rate ranging from 170 – 190+.  They’ve tested for everything, viral & bacterial.  Her labs look okay & this Klebsiella?  We know it’s grown virtually totally resistant to antibiotics and is potentially a real problem for Emerson.  We also know she’s colonized with it (i.e., it lives inside her body somewhere).  But, repeat cultures for it in her urine & her blood have all been negative.  So, there’s no reason to believe at this time it’s causing all this.  What then?  That’s the million dollar question around here.  She’s on several strong antibiotics & they’re slowly removing them one by one.  Could it be a drug fever?  Maybe, but as we remove the antibiotics her fevers are growing stronger & more persistent.  NOT consistent with a drug reaction.  Could it be a symptom of her new diagnosis?  Maybe.
The only thing we haven’t looked closely at is Emerson’s brain.  She’s been throwing massive “fits” this admission – pulling her hair out, screaming, throwing herself over the bed rails, slapping me across the face…  The team has been increasing scheduled doses of Ativan every couple days & psych has been consulted several times.  She is now being referred into the infant mental health program.  Mind you, it’s not that she’s never thrown a fit before, but this admission is ugly.  She’s never had a psych referral & there’s never been talk of needing mental health intervention.  We’ve all assumed it’s behavioral, but could there actually be something going on in her brain?  It may be a stretch, but it could explain these fevers & could also explain the seemingly sudden onset of this new diagnosis.  Dysautonomia is a neurological, brain signaling disorder.  Something else to explore with the team…
Otherwise, we’re kinda stuckL.  A transplant recipient can’t be discharged from the hospital with daily fever spikes over 102◦ (39◦ C).  It just doesn’t happen (especially without a clear cause).  She is significantly immune suppressed & the risk for serious infection is simply too high.  If I took her home today & she spiked a fever again tomorrow morning (as she does every morning), we’d be right back.  On a positive note, the team has been using this admission to get things in order for future admissions.  The transplant coordinator has, with input from all her different physicians, compiled a short, 4 page summary of Emerson – her history, diagnoses, meds, unusual reactions, new anatomy, etc.  She’s working with the floor staff to identify a group of primary nurses & educating each of them individually.  She’s also working with the residents & has copies for all the weekend staff.  Good stuffJ!  She said it’s sometimes difficult to get nurses to come forward for primary nursing.  Not so with Emerson… one email request elicited several eager volunteers.  Even through the fits of rage, I’m thankful so many are able to see her beautiful spirit.  Indeed we have a great group of nurses wanting to help!!  There are so many good people here!!
I continue to get home every afternoon for sports practices, homework, & dinner.  I’m not able to spend time with Jim as he’d like, but I’m doing my best.  As usual I seem to be running from one place to the other (with an hour drive between home & hospital), trying to keep all my balls in the air.  If only I could clone myself…
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Tears
Submitted by Erika on Mon, 10/18/2010 - 1:53pm.
The first part of this entry is not about Emerson… The first part of this entry is about a beautiful, strong, compassionate woman & mother who was taken from the world far too early this weekend.  Gina Behr passed away suddenly & unexpectedly Saturday morning.  We were born in the same year, just 10 days apart.  I met Gina in Omaha & while she silently battled her own health issues, she openly cared for and supported so many others.  She was a glistening example of all that is good in this world.  She leaves behind 3 young children & a loving, supportive husband.  I cannot imagine the pain in their hearts as they awoke this morning to what, undoubtedly, felt like a horrific nightmare.  My heart is so heavy.  I cannot believe she is gone.  Gina’s son, Kyle (14 yrs old), created a Facebook page for his mother.  Please visit & leave a message of support for her family.  Please also remember them in your prayers…  I’ll never understand all the pain & suffering we’ve witnessed in the past 3 years.  It is just too, too much.
http://www.facebook.com/profile.php?id=1523775620#!/pages/Prayers-for-Gina-Behr-who-died-on-October-16/135036613212935
As for Emerson… I’m afraid it’s not great news.  Blood cultures from both Saturday & Sunday are positive for Klebsiella.  In the lab it grew resistant to everything.  There was talk earlier of trying a ‘cousin’ drug to the one it last grew susceptible to.  It was discovered over the weekend, though, that the manufacturer has stopped producing that drug.  It is no longer available.  How exactly does a company just stop producing a life-saving drug??  Good question… Apparently a few hospitals in the country still have a small supply, but none are willing to release it.  The pharmacist is working on it more today.
Eme is currently on 4 different, strong IV antibiotics and the combination seems to be keeping her infection at bay for now.  It is not, however, killing it.  She continues to spike fevers & crashed once over the weekend.  Otherwise she looks relatively well.  I’m told things could change very quickly, though, if we’re unable to find a combination of drugs to kill this infection.  All speculate the next 48 hours will be critical – the potential exists for her to grow very sick, very fast.
Eme’s liver doc kneeled down next to me this morning & said she doesn’t know if we can treat this.  For now, though, I’m remaining positive & hopeful.  Emerson is scheduled for a brain MRI this afternoon.  They’re looking for a possible cause to explain the sudden onset of autonomic dysfunction this admission.  They’re also planning another care conference for later in the week to further discuss this Klebsiella.  I continue to be baffled by where it’s coming from.  All testing thus far has been unable to isolate a source, but obviously there is one… somewhere.  If her constant cycle of infection were due only to a weakened immune system wouldn’t you expect her to grow something else every now & then?  If she’s translocating from her gut wouldn’t you occasionally anticipate an e-coli, or some other gut flora?  Why does she ONLY grow Klebsiella... every time?  Where is it coming from??
I’m taking it one day, one half-day at a time right now.  I simply don’t have the mental capacity to process through the what-ifs.  She is stable at the moment & I’m hanging my hat on that.  If things change later today I’ll tackle that then.  Intellectually I knew this scenario was possible but I’ve never really allowed myself to wander to the place where she can’t fight it.  She’s always beaten the odds.  She will again… she has to.
In the end, I’m succumbing to the fact we’re going to be here a while & am (a full month into this admission) choosing to settle in a bit today.  I think I’ll decorate for HalloweenJ.  The kids all have their costumes & I’ve promised the boys a trip to Frightfest at Elitch Gardens this weekend.  Fun (or should I say scary) stuff!!
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Better News
Submitted by Erika on Tue, 10/19/2010 - 11:09am.
The Infectious Disease team thinks they’ve found a combination of drugs to fight Eme’s infection… this time.  The drugs are killing her Klebsiella in a petri dish in the lab.  Fingers crossed it will do the same in her little body.  The news from there continues to be concerning – where is this coming from & if we can’t locate a source what happens next time?  Blood cultures continue to be positive & she continues to require daily fluid boluses for low blood pressures & to spike fevers.  She also had some pretty significant heart rate instability last night with numbers on the monitor ranging from 80 – 260.  Otherwise she’s sitting up, watching Mickey Mouse, & coloring.  She wants to go home… so do I!!
A care conference is tentatively scheduled for Thursday afternoon.  If we can get negative blood cultures starting today, if we can get all her IV meds ordered & delivered, and if her blood pressures stabilize soon we might be able to go Friday & finish treatment at home.  If, if, if… hanging on hard to each of them.
I have a splitting headache this morning & am hoping for a private sleep room and a nap this afternoon.  More tomorrow…
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Sunday Night
Submitted by Erika on Sun, 10/24/2010 - 8:12pm.
update:  And now she's dumping... great.  Normal 24 hour stool output = 500 mls /  Past 15 hours = 1,500 mls.   They're sending a stool sample for viral studies & will discuss a scope for rejection in the morning.  Seriously??

 

I’ve been at a loss for what to say lately… which explains my lack of updates.  Sorry.  Unfortunately, no news is not good news this time.  No news is more like, “how on earth do I explain that now there is even more going on?”  We’ve been at this 3 years, I know better than to expect things to progress the way they “should”.  I can’t tell you how many times we’ve had a tentative discharge date this admission… only to discover something else is brewing & wind up right back at square one.  I couldn’t make this stuff up if I tried.  It’s truly beyond my wildest imagination.  It is Emerson, though, & it is our life.  She desperately needs (not to mention deserves) a break… sadly, though, I’m not sure it’s meant to be.
Infectious Disease has been searching across the country for the one critical antibiotic to treat the Klebsiella in Emerson’s blood.  We need a possible extended course – 3 to 4 weeks - & at last report they had 10 days.  They’re still searching.  Emerson continues to spike high fevers everyday & she continues to have trouble maintaining her blood pressure.  It’s crazy – she came into this admission with high blood pressure (on several meds to lower it) & has completely taken a 180◦ turn.  She’s now on medication dosed 4 times a day to increase her bp & she’s getting 24 hour IV maintenance fluid in ADDITION to full intestinal feeds.  On top of that, she’s requiring 1-2 “rescue” boluses per day!!  Basically fluid helps your body to increase its blood pressure.  Proper fluid balance is imperative to maintaining proper bps.  Emerson is getting DOUBLE her fluid requirement + additional boluses (quick volume infusions) totaling nearly 4 ½ liters of fluid everyday!!  As I said, it’s CRAZY!  I have no idea how we’re going to manage this at home (without the luxury of monitors & electric bp cuffs & doctors down the hall) & no one else does either.  As such, all discussions re: discharge have been put on hold.
And if all that wasn’t enough… Emerson grew Coag Negative Staph in her blood this weekend – THRU 4 strong IV antibiotics, at least 2 of which should provide more than adequate coverage to kill that bug.  So, we are faced with two possibilities – 1) another extremely strong & resistant organism or 2) another endocarditis (infection in her heart).  The team is learning towards the latter.  A standard echo is scheduled for tomorrow & if that doesn’t show anything a TEE (trans esophageal echo – done by placing a scope down her throat) will be scheduled for later in the week.
In all Eme’s gained nearly 10 pounds from the fluid required to maintain her blood pressure & she’s growing 2 different bugs in her blood.  In a perfect world they’d pull her line & manage this on peripheral IVs for a few days before placing another one.  With her daily need for fluid resuscitation, though, she cannot be managed without a line.  So, it stays in & we hope we can treat through it.  As I’ve said many times before, there are no easy decisions regarding Emerson’s care anymore.  The “perfect” world was lost to her years ago.
I’d tell you what happened at the care conference last week, but all the decisions made there have been tossed out the window on account of Eme’s latest blood infection.  I can tell you what happened at conferences with the boys last week, though (get ready for a little braggingJ)… Collin is getting As & A+s in every class & is doing just fabulous.  He’s described as a well organized, conscientious learner & a leader!  That’s my boy!!  Bradley, also, is thriving at his new school.  He’s improved over half a grade level in reading in just 2 short months!  The teachers say he is their sponge… always eager to learn & always giving 110%.  Wow – they make their Mom proud!!  As for how our family situation is affecting them, Bradley seems to be mostly unphased by it all (not a big surprise to me).  School is his “safe place” - where he can be with his friends & not think about what is happening at home.  Collin, on the other hand, is much more sensitive & outwardly affected by everything.  For the most part I’m told he’s doing well, but is occasionally found tearing up in class.  Oh how I wish I could shelter him from all this.  He is 11; he’s not supposed to be worried about his sister’s latest blood infection.  He shouldn’t know about resistant organisms & the hierarchy of IV antibiotics.  But he does.  He knows about it all & he’s always listening.  Even when you think he’s not… he is.  He wants to know what’s going to happen to his baby sister & when the news isn’t good the tears start to flow.  It breaks my heart.  What I wouldn’t give to take this away from him.
From there things just keep rolling down hill.  Unfortunately several of our transplant friends find themselves in trouble this weekend & it’s been weighing very heavily on my heart.  I’m not sure where the statistics for bowel transplant come from, but from my vantage point just about no one survives 5 years post op.  Please keep Kylie, Ashley, & Cooper in your prayers this evening – they, along with many other transplant babies, desperately need them tonight.
As for me, I’m sad & I’m tired.  Tired of living in a hospital, tired of sleeping on a piece of wood, tired of cafeteria food, tired of wondering if my daughter will ever make it to elementary school, tired of not being able to plan anything, tired of the unknown – those “test results” that turn your world upside down, tired of disappointing my boys over & over again, just plain tired of it all…
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Happy Halloween!
Submitted by Erika on Sun, 10/31/2010 - 5:17pm.
Sorry - forgot to update about the antibiotic situation... the drug is Amikacin for all who asked.  Tobramycin is gone.  Amikacin is all we have left & apparently it is no longer available through the manufacturer.  The team here was able to find 13 days - that's all.  Ideally she'd have 3 weeks of it, but instead will get only 1 day shy of 2 weeks.  Will it be enough?  Time will tell... They're keeping her on some additional meds that (in the lab) worked in combination with Amikacin for the full 3 weeks.  From there we'll have to wait & see if the Klebsiella comes back & what it looks like.  Anyway you slice it, though, it's a potentially very bad situation.  Emerson simply doesn't have many more go arounds left with this bug.

So, here’s the scoop… I’m taking a CNA (certified nurse assistant) class which started last week.  It’s a 3 week class that meets Monday – Friday 5 hours a day & includes 3 8 hour clinicals starting next week.  By obtaining my NA certification I’m able to get paid to care for Emerson at home.  It won’t be much (max 4-6 hours a day) as most of Eme’s cares are skilled nursing duties, but it will cover some routine things like ostomy & vesicostomy care, daily therapy exercises (as prescribed by OT, PT, & SP), etc.  It will not include things like administering meds & breathing treatments, and central line care – things I do, but are considered RN duties.

I’ve been contemplating this for a while & put it off for several reasons.  Among other things, there never seemed to be a good time.  Emerson is in good hands here, though, & the team has been very supportive.  They really encourage me to leave the hospital & take time for myself every day.  I missed rounds last week, but they always came by in the early mornings/afternoons to chat – I couldn’t ask for a greater group of professionals!  We are so blessed!
So… my class schedule, combined with homework, time with the boys, & very little sleep accounts for my lack of recent updates.  Sorry.
There’s not much new with Emerson.  She continues on IV antibiotics & huge amounts of fluid to manage her autonomic dysfunction.  A scope from last week showed no sign of rejection, but she continues to dump.  As such, intestinal feeds were stopped & she’s back on TPN and lipids for nutrition.  All stool studies were negative for infection, so we don’t know what’s causing this.  Some kind of viral illness (SKV as Dr. B would call itJ), though, seems the most likely culprit.
Emerson’s here at least another full week on antibiotics.  From there we have to get her back on full feeds & figure out how we’re going to manage this autonomic dysfunction at home.  In that time we’ll hope & pray she doesn’t get another infection.  I’m afraid we’ve started a vicious cycle, though.  Emerson + a central line + this Klebsiella infection = bad, bad news.  Unfortunately she must have a line now to maintain her blood pressure.  I have no idea how this is going to work & can only hope she actually makes it home so this class doesn’t wind up being a complete waste of my time & energy.
The doctors asked us to consider signing a DNR on Friday.  It’s almost too much to talk about right now, but we are considering it.  In all it’s probably the right thing to do for everyone involved.  It’s just so contrary to everything we’ve been fighting so hard for.  Everyone here has been wonderfully patient in talking to us about it & I’m confident we’ll come to the right decision.  I suppose I need to start by grieving the loss of my hopes & dreams.  Then maybe I can somehow find a way to do this.  They’ve assured us they’ll continue to aggressively treat every infection.  If Eme gets so sick again, though, that her heart stops beating they won’t try to bring her back.  One doctor said to code her at this point would be “cruel & unusual punishment”.  If she’s even able to survive another code, the resulting trauma to her organs would be nearly insurmountable.  The recovery process would be long & grueling and would likely not end favorably as it did last time.  I believe they’re right… again, it’s just so hard to sign my name to a piece of paper that essentially says “let my daughter die”.  It’s something no parent should ever have to do.
Sorry for the heavy topic on this festive day… Happy Halloween to All!!  Emerson toddled downstairs in a pink wig & witch hat this afternoon for some holiday crafts.  Too cute!!
Please bear with me next week as classes continue.  I’ll try to post a quick update mid week & will certainly post if anything happens.  Otherwise, assume no news is good news (or status quo news) for the next several days!  Thanks!!
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Big Week
Submitted by Erika on Mon, 03/14/2011 - 12:14pm.
The verdict is in…  Dr. L (chief of the program) is on service this week.  He entered Eme’s room this morning & looked me straight in the eyes.  He said “in my opinion we’re way past the point of thinking drugs are going to make any difference here”.  I agree.  He’s taking Emerson to the OR tomorrow to remove the top portion of her transplanted bowel.  He’ll reposition her roux.  It will be a major surgery.  I asked if the remaining bowel will be enough to absorb full feeds.  He said yes, that’s the hope.  He said we need to remove the non-functioning (basically pool of sitting bile she’s throwing up all day long) & diseased bowel before it spreads to the remaining, presumably still working, part.
I had a terrible night last night.  I was up until 3 or 4 AM.  I couldn’t sleep through the thoughts running circles in my head & the tears streaming rivers down my cheeks.  This was the week.  I’d decided.  This week the team was going to choose to do something to treat my daughter or I was intent to take her home – home to live with and love for as many days as she had left in her current condition.  Decisions have come so hard for me lately, but this one I’d made.
By the grace of God it was not a battle I had to fight.  The surgeons met this morning… they discussed Emerson & they agreed.  Indeed something, now, is being done.
How do I feel about it?  Honestly, I feel like I'm going to vomit.  I’d hoped to start with a round of steroids to treat this rejection.  I respect Dr. L, though, & his professional opinion.  He’s the most senior member of this team & he’s the best at what he does.  I’m on board.  Infectious Disease has been in to discuss their recommendations for managing Emerson through the surgery & immediately thereafter.  Dr. L will be slicing through bowel, she is significantly immune suppressed.  The likelihood for massive infection is big.  They’ll do everything possible to limit the risk for sepsis.  Emerson, also, has other conditions (autonomic dysfunction for one) that complicate everything.  She has, historically, had a tough time recovering from major surgery.  I’m not expecting this time to be different.  I’m trying to gear myself up for what may be a difficult week or two to come.
In the end I asked for something & that’s what we’ll get.  HOPE.  That’s the word I live by now.  That’s what we need.  God willing, that is what we’ll get.
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Quickie
Submitted by Erika on Thu, 11/04/2010 - 1:56pm.
I promised a short, mid-week update… here it is:
Emerson continues to dump from her ostomy & feeds, again, were shut off completely this morning.  She had gotten as high as 20ml/hr (goal is 90), but again we are back to zero.  She is on TPN & lipids for nutrition.  Testing for infection has all returned negative & the biopsy last week showed no sign of rejection.  There are still no good answers as to why she’s not recovering from whatever this is.
Emerson spiked a high fever Tuesday with an accompanying bout of very low blood pressure.  Blood cultures obtained at the time have all returned positive for yeast (fungus).  That’s very bad news.  I was told 2 weeks ago she will not survive a bout of fungal sepsis… not in her current weakened state.  It would appear at this time as though the infection may be isolated to her line.  I would expect her to be much sicker if it were running rampid through her bloodstream.  The team started 2 very strong anti-fungal meds & now we wait to see what direction this goes.  God willing it won’t get any worse.  It could.
I passed my final exam today!!  It’s a 3 week course – the first half is classroom/book work & the second half is clinical.  We completed the first half today & I got a 98% on my final - can’t wait to tell the boys!  I’m in a nursing home from 6am – 2pm tomorrow for my first clinical.  Hoping Eme has a quiet night…
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Friday
Submitted by Erika on Fri, 11/05/2010 - 7:47pm.
The Klebsiella is back.  48 hours off Amikacin & blood cultures are positive again.  The team is now resorting to an antibiotic that’s never been used in this hospital before – one only documented to have been used on a child under the age of 8 twice.  Anywhere in the world.  Just twice.
Yeast & now Klebsiella in her blood… sigh… that’s all I have the energy to say tonight.
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Saturday
Submitted by Erika on Sat, 11/06/2010 - 9:12am.
Emerson went to the OR at midnight for a new line.  They pulled her broviac & replaced it with a temporary line in her right jugular (neck) vein.  They attempted to thread a temporary left subclavian (chest) line, but could not.  As feared, we have lost another site for central line access.  Emerson’s problems are piling up.  She desperately needs a long break to regenerate her tired & broken little body.
She is very puffy this morning & not engaging much.  She’s tired.  The team has ordered an ultrasound of her neck to rule out SVC syndrome.  SVC syndrome causes the obstruction of blood flow through the superior vena cava & can cause swelling of the arms &/or face.  She has a history of developing blood clots & is on daily injections to prevent them.  Hematology is consulting this afternoon.
She continues to dump from her ostomy & remains on TPN for full nutrition.
In all, though, it would appear as though we caught this early & the vast array of strong IV antibiotics are doing their job.  She is breathing well on her own this morning & her blood pressures, although soft, are acceptable.  With the combination of yeast & Klebsiella in her blood it could be so much worse.
I completed my first day of clinicals in a long term care facility (aka nursing home) yesterday - the team conferenced me in over the phone for rounds.  Luckily I’m here for the weekend.  By tomorrow night we should have a better idea of which way this is going to go.  If necessary I’ll skip clinicals on Monday.  Emerson is my number one priority… she is, after all, the only reason I’m taking this class in the first place.
My head is pounding… They’re talking about a 28+ day course of treatment for these latest infections… Are we looking at another holiday here?... Does this ever get any better?...
I’m having a hard time seeing the light at the end of the tunnel this morning.
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Monday
Submitted by Erika on Mon, 11/08/2010 - 8:23pm.
Thank you for all your beautiful messages.  Emerson continues to struggle with low blood pressures, but overall is doing better since her line was removed this weekend.  Cultures are negative!  The plan today is to limp by on this temporary line for as long as possible before placing another permanent one.
I have one more clinical day tomorrow then it’s back to the classroom.  I’m really enjoying the “residents” at the nursing home, but am not enjoying the 6am start time.  I think I could sleep for a week…
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Thursday Update
Submitted by Erika on Thu, 11/11/2010 - 11:01pm.
Tomorrow is “graduation day”!!  Amazing how fast it wentJ!  I have lots to share & promise to return to more detailed posts next week once I’m back to a more familiar (& less crazy) routine.
Emerson is pretty much status quo – she continues to struggle everyday with hypotension & we continue to chase her low bps every night with fluid boluses & rescue doses of her cardiac med.  She’s been wearing a holter monitor for the past 2 days to better assess her cardiac rhythm during these “events”.  Additionally, the team ordered psych meds to help calm her through episodes of rage.  She spiked a fever this morning & has been sleeping upwards of 14 hours a day for the past 2 days.
The doctor again initiated conversation re: signing a DNR.  I’d hoped he’d forgotten about it, but no such luck.  We had a lengthy discussion this morning… more on that to follow.
Collin has a hockey tournament in Vail this weekend.  I’m driving up tomorrow & staying the night.  Go Rampage!!
Finally, our dear transplant friend Kylie lost her transplanted bowel this afternoon.  It is devastating news for her family & means her only hope for survival rests on another risky transplant & lengthy recovery.  It all hits so close to home.  My heart is very heavy tonight.  Please include Kylie, her mother Joan, & their family in your prayers.  Stay strong sweet Kylie, we love you so much!
If only love could heal...  if only…
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Done
Submitted by Erika on Thu, 11/18/2010 - 12:08am.
I’m done… you want my inner most thoughts today?  Here goes – I’M DONE.
I’m done trying to educate 20-something residents as to why Emerson is different from the patient across the hall.  I’m done telling her story over & over again.  I’m done advocating, I’m done fighting.  I’m talked out.  My brain is tired.  My body is tired.  My soul is so, so tired…  It occurred to me today in rather abrupt fashion why the transplant surgeons manage everything themselves in Omaha.  They rarely seek consultation from outside specialists… Why?  Because NO ONE understands the complexity of these kids like they do.  NO ONE.
Emerson doesn’t play by the ‘rules’.  She never has & she never will.  This admission, unfortunately, has only solidified how complicated she really is.  Things are not getting easier.  She is not growing ‘healthier’.  As much as I’d hoped & prayed otherwise, it’s not happening.
If we stay here & attempt to fix all that is wrong Emerson will die here… in this hospital… not tomorrow, but eventually.  We cannot fix her and I’m DONE trying.  I called the team in this afternoon & announced my desire to take her home.  ASAP.  I want to spend the time I have left with her at home.  Not here.  Maybe she’ll die from unresolved hypotension… if it not that, though, it’ll be something else.  Her underlying disease is progressing & there’s no way to prevent it at this point.
Antibiotic treatment for Emerson’s last infections will be completed Friday & we’re tentatively planning to discharge Saturday morning.  She’ll leave with a permanent broviac (central line), TPN & lipids for nutrition, & multiple new medications to address her low blood pressure.
She spiked a fever to 39.2C (102.5F) this morning & she continues to dump.  Feeds, which were stalled at 25 mls/hr, have been shut off completely.  The team is scoping her again this week to rule out rejection.  If blood cultures from this morning return positive for another infection we’ll discharge on IV antibiotics.  Whatever it takes, we are going home this weekend - not because Emerson is better, but because that is where we need to be!
The team continues to encourage a DNR but I have not yet made a final decision.  I told Eme’s primary doc last week that it feels very contrary to everything we’ve been fighting so hard for these past 3 years.  He responded by saying quite the contrary, he thinks it’s completely in line with everything we’ve been fighting for.  He said he’s never heard us request life at all costs… only quality of life.  He said there is virtually no likelihood of her surviving another code without multiple organ loss & they are not transplanting her again - best case scenario she’d be in-patient 12+ months and would leave wheelchair bound with probable brain damage.  Her body has been through too, too much to expect a different outcome at this point.  Put that way it makes sense.  I know.  My heart just hasn’t caught up with my brain on it all.  The day I sign a DNR will be the hardest day yet… I don’t know how I’ll make my hand form the letters of my name.
Psychiatry came by today & started a new medication to better control Emerson’s outbursts during the day.  She pulls her hair out by the fistful & has started trying to pull her lines & tubes out too.  She’s never done this before.  Ideally we’d treat her with behavioral therapy (play therapy, art therapy, etc.).  In the end, though, there just isn’t time for all that.  When I talk about quality of life, her mood & behavior are at the top of that list.  I want to enjoy the time I have with her, now.  The medicine that was chosen causes diabetes – obviously not great.  We’re not planning for long term, though.  I told the Psychiatrist that while I’m coming to terms with the likely outcome of all this, I hold on to a small piece of hope that things will turn around.  Of course you do, he said, without hope you’d never be able to do this.  How true…  If 6 months from now things look better we’ll revisit the use of this medication & consider switching to something different.
Emerson was diagnosed yesterday by the Speech therapy team as having Apraxia – a neurological disorder that affects the brain’s ability to send proper signals to move the muscles involved in speech.  It can range from mild to severe in its presentation & Emerson, no big surprise, tends to the latter.  As such, an augmentative therapist is coming tomorrow morning to introduce & train us on a specialized communication device.  I’m told it looks & works similar to an I-Pad (touch screen).  They tell me Emerson is plenty smart enough to learn to use it… hopefully it will help.  I’ve read a little about this newest diagnosis & the speech therapist directed me to a support group on-line.  What I need now is a support group for parents with children who’ve undergone 2 multiple organ transplants & are left with virtually no properly functioning body systems.  Where do I find that group??
Collin & I were reminiscing about Christmases past this afternoon.  He talked about how much he loved the Christmas in Omaha when so many wonderful, generous people showered us with so many wonderful gifts (over 15 UPS boxes in all!!).  I reminded him how sick Emerson was then, though, & said I’d take a few less gifts for a little healthier Eme.  He paused, wiped the tears from his eyes, & said he’d take no gifts at all if only Emerson could be home for Christmas this year… if only she could live at home… if only she could live at all.  This has taken such a toll on Collin.  How I wish I could take it away from him…  Never in a million years could I ever have imagined being in this place.
Please don’t misinterpret my words.  Emerson is not dying tonight.  She will not die tomorrow.  The future, however, is uncertain & the tone here is no longer overly optimistic.  Simply put, the prognosis is not good.  Certainly, though, no one but God knows when she’ll take her last breath.  The most intelligent doctors in the world can only guess… & she’s proven them all wrong before!  I have not given up on Emerson - not now, not ever.
I’ll end tonight with words from a song that say it better than I ever could:
“God is great, but sometimes life ain’t good,
When I pray it doesn’t always turn out like I think it should,
But I do it anyway…”
And indeed I do…  Please God strengthen Emerson – relieve her pain & guard her from danger, protect her brothers, & guide us all through this journey.  Please God allow us time together to laugh, to play, & to love.  Allow us time to make memories, outside these hospital walls.  We need more time God… more time… please.  I have no bible verse to quote, only words from my heart.  Please God hear them tonight.
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A New Day
Submitted by Erika on Thu, 11/18/2010 - 10:35am.
As usual, your words bring me to tears this morning...  I’m constantly in awe of all those who continue to read & love & support.  It’s been such a long, hard journey – I wouldn’t blame anyone for having given up on us a long time ago.  Our story has been one of broken dreams & skirted miracles… a bit like a broken record at times.  We all know how difficult it is to hear a broken record skip – the same words over and over again.  Indeed that is how our life feels – the same words over and over again.  Thank you for staying.  Thank you for praying.  Thank you for just being you.  I know it’s difficult to know what to say.  Trust me, I know.  The truth is there aren’t any magic words that can ease the pain of where we find ourselves today.  Please don’t apologize for not finding them – they don’t exist.  Your heartfelt sentiments are beautiful & inspire me to keep fighting.  They remind me of all the good coming from this.  Just knowing you are here, though, walking along side us, gives me more peace & comfort than you could imagine.  Please write something, it’s the only way I know you are reading.  Please don’t worry about what you say, though… I treasure it all… every post, long & short.  Thank You… from the bottom of my heart… Thank You.
If you hadn’t guessed, yesterday was a tough day.  There are those days when the reality of this path we walk comes crashing down hard on my soul.  Yesterday was one of those days.  It’s been a long, hard-fought battle & I’m tired…
The good news is that several of Emerson’s primary doctors stopped to visit yesterday afternoon – angels sent exactly when I needed them.  Her primary doctors – the ones who’ve gotten to know her, many of whom knew her before words of transplant were ever whispered - are the ones who’ve taken the time to stay involved in her care.  They are GI doctors, Liver doctors, Endocrinologists, Cardiologists, Urologists… They love her.  They understand me.  They are my salvation through all this.  I appreciate their knowledge & expertise & trust them with my daughter’s care… implicitly.  We are truly blessed to have some remarkable professionals with us on this journey, both here & in Omaha.
Beyond them, though, there have been many others involved along the way.  Both Denver & Omaha are teaching hospitals.  I’ve always remained patient & understanding in the face of new grads, residents, & fellows.  They are training.  They need a place to learn.  If we can teach them something then, again, I can find some good in all this.  There is obviously a lot to learn from Emerson & maybe a little to learn from me to.  Not about medicine.  I don’t claim to have any great knowledge there, but maybe about dealing with parents… parents of chronically ill children.  Indeed we are a breed all our ownJ!
I can accept the student who recognizes his/her role in the care of my daughter & I’ve met many exceptional ones along the way.  What I cannot accept, though, is the one who walks into Emerson’s room & attempts to change our care plan, uproot our diagnoses’, & question everything we’ve worked so hard to put in place – often through months & months of trial & error and failure & success, through the watchful eyes of trained & educated professionals.  That I cannot accept.  That I can no longer fight.
Rest assured everything from yesterday’s little confrontation was handled swiftly & professionally.  It’s a new day & it’s over.  I still want to go home, though.  That hasn’t changed…
Emerson’s stool output was over 1,200 yesterday (her normal is 400-500/day).  So far all studies continue to return negative for infection.  It sure would be nice to know what’s causing this.  She’s been stooling out for nearly 4 weeks with no good reason to explain it.  That is not normal for Emerson.  An intestinal scope, originally scheduled for tomorrow, has been pushed up to this afternoon.  Again they’ll look for rejection.  And again I’ll say a prayer that things look “okay” in there.  With what our friends Ashley & Kylie have endured in the past several months (both lost their transplanted bowels to severe rejection), I simply can’t fathom a place where Emerson, too, would find herself there.  My gut tells me it’s okay (& my gut has become incredibly accurate when it comes to Emerson).  I should know more this afternoon.
I drove home last night to watch Bradley play in his final basketball game of the season.  Good stuff!  We went to dinner afterwards & planned our upcoming week – the boys are out of school all week & we’ve decided to bypass Thanksgiving, moving squarely into the Christmas season.  We’ll put up the tree, shop for some fun outdoor decorations, carefully construct our village (which hasn’t come out of the box for 3 full years!), bake cookies, drink hot chocolate, sing carols… you get the picture.  If Emerson is home then we’re celebrating it – now.  We’re not going to wait.  We’ll go out for a traditional dinner Thanksgiving eve, but we’re otherwise skipping over turkey day this year - on to bigger & better things J…

Oh & we're adding another primary doctor to Emerson's team - a psychiatrist, Dr. L.  He is great!  The first several times he consulted were a bit frustrating, but we're coming to understand each other well.  He is helping to control Emerson's anxiety & frustrations AND through it all is arranging for art & music therapy while she's in-patient AND is hiring a sitter to spend time with her while I'm away.  A volunteer I asked??  Nope - a sitter.  His service will pay (yep pay) someone to come sit with Emerson when I cannot.  How cool is that?  How on earth is it we've been here over 3 years & never knew about this??

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Not Tomorrow :(
Submitted by Erika on Fri, 11/19/2010 - 4:01pm.
Wow… so many guestbook entries!!  I feel an overwhelming responsibility to write something meaningful todayJ - I forget sometimes how many people are reading!  Unfortunately, though, I’m long overdue for an afternoon nap, so all I’ve got today are the facts:
An x-ray from last night revealed pulmonary edema (fluid in the lungs) – no surprise as Emerson is 32 liters – 8.5 GALLONS - positive from the day this admission began.  Can you imagine retaining an extra nearly 9 gallons of fluid?  And she’s only 4 years old!  Holy Cow!  Her skin is swollen, her face is plump, & the fluid is running out of places to go.  It’s now found its way into her lungs.  It always does.  We can’t pull the fluid off, though, because it will cause her blood pressure to drop.  Her oxygen saturation is dipping periodically throughout the day & often at night.  It’s not critical, though, so for now we just wait and watch.
In more distressing news, it appears as though the dreaded “K” is back.  Remember the fever earlier this week?  Urine cultures are positive for what looks like another round of Klebsiella.  Final identification of the bug is expected later today.  They’re treating it aggressively in hopes of sparing the new central line placed yesterday.  Hopefully we can keep this infection in her bladder & out of her blood.
So… we’re still going home.  On IV antibiotics.  Like I said… whatever it takes!  But… we won’t be able to leave tomorrow.  We need final sensitivities on her UTI & antibiotics ordered for home.  Hopefully she’ll discharge Monday, but realistically I'm planning on Tuesday or Wednesday.
Our home nursing agency just called & said they have to formally discharge Emerson because she’s been in the hospital longer than 60 days.  They won’t re-admit her until they’ve located & hired a nurse for her.  Unfortunately, her care requirements have increased significantly this admission & they have no one qualified to manage her case.  As great as it all sounded, I’m not sure the whole home nursing thing is ever really going to pan out.
On that note, the team has expressed concern in discharging Emerson to home on her current schedule.  It’s insane!  I must admit, too, I’m a little nervous.  I know my limits & I know this is generally more than I can do.  Not only is she back on TPN & lipids, but also IV antibiotics, & new meds including some that must be dosed in the middle of the night.  Jim, while a great help in many ways, doesn’t do any cares… he hasn’t learned & doesn’t, for the most part, want to.  It’s my job & I’m going to be putting in some major overtime in the coming weeks!!
I don’t know if I can do this… I don’t know how long we’ll be able to stay at home… The only thing I do know, though, is I have to try…
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Tomorrow :)
Submitted by Erika on Mon, 11/22/2010 - 10:23pm.
Everything’s in place for tomorrow - TPN, lipids, IV antibiotics, umpteen oral meds (given through her tube & dosed umpteen times a day), breathing treatments, ostomy care (stool), vesicostomy care (urine)… but we’ll manage it from the comfort of H---.  Correction, I’LL manage it from the comfort of H---.  Emerson has 14 days remaining on her antibiotics, which means she’ll probably be back in roughly, oh, 16 days - 2 short weeks to gear up for next time.  I chuckle at all our new nurses who are so sad to see Emerson go.  We’ll be back friends, rest assured.  We’ll see you again soon!
Busy, busy day tomorrow… Lots to move out of here – amazing how much stuff you can accumulate in 2 months!  I’ll update again soon from ‘you know where’ ;)!
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Black... Friday?
Submitted by Erika on Fri, 11/26/2010 - 11:41am.
Technically it was Black Thursday night.  Whatever you call it, though, I rounded up 2 semi-willing participants last night & headed out for my very first ever taste of the highly advertised phenomenon.  This, folks, is why I need a daughter…  In the absence of one who is either old enough or healthy enough, though, Collin & Bradley graciously agreed to assume the role of my shopping companions!
I changed Eme’s diaper, put on her pj’s, administered night meds & breathing treatments, started her IV antibiotic & headed out the door about 9:30PM, bundled from head to toe.  The thermometer read 14 degrees & we were headed to an outdoor outlet mall.  Brrrrrrrr…  The bribe?  A stop at Harry & David for “anything you want (candy)” & the toy store for “a Black Friday deal”.  My objective?  Nothing really, just the chance to find out what all the hype is about.  I couldn’t buy Christmas presents since my recipients were with me.  Plus, in the absence of an Apple store there was nothing there on their Xmas lists this year!
We drove up the interstate in good company… amazing how many people were on the road at that hour of the night.  We got closer to the mall, though, & my jaw about hit the floor - a line of cars as far as the eye could see waiting to exit the highway.  Were they headed to the same place as us?  Ummmm yes, I’m afraid so.  Luckily the backup was from the north & we were coming from the south.  I made a few fancy driving maneuvers & managed to skirt most of the traffic entering the mall.  Where to park though?  It was 9:50PM & the stores opened at 10:00.  Already people were parking at the surrounding businesses & walking across the street, even blocks, to line up on the sidewalks outside.  Unbelievable!  Thanks to Collin’s eagle eye we found a parking spot, put our hats on, zipped up our coats, & opened the doors to brave the cold… & the crowds.
First stop - Off 5th.  Unfortunately I was banned from trying on clothes so it was a quick stop.  Next - Harry & David.  Candy, candy, & more candy!  Then - Toys R Us.  A line about 20 minutes deep.  I asked if they really wanted to wait in the cold to go in.  Silly question.  We finally got in to find the checkout line wrapped around the store.  Again I asked if they really wanted to wait in line for a toy they’d likely never play with anyhow.  Another silly question!  The find of the night?  A $35 dipping dots ice cream machine for $14.97.  We got the last one!!  A few more quick stops, a picture of the huge Christmas tree, & we were running back to the car.  A stop through the McDonald’s drive thru for hot chocolate & we were headed home.  1AM!
Target opened at 5AM & the boys tried to talk me into staying up.  They suggested maybe we bake cookies to pass the time.  At 1AM?  I made the executive decision to end our Black Friday experience for the year.  Maybe next year… we are far from professionals yet.  We need to ease into this!  And as for next year - Me?  Absolutely… shopping in the middle of the night?  I’m in!  Bradley?  An enthusiastic “Yes”.  Collin?  Will depend on the “weather”.  Emerson?  God willing one day.  Jim?  Never.  Thank Goodness we had children!!
Speaking of things to be thankful for, I’m thankful to be home.  A simple little something that most probably take for granted.  I looked around yesterday, though, & found myself so thankful for that – all my babies under one roof.  Home sweet home.  Heaven.
Our Thanksgiving Day was pretty uneventful.  No turkey, no mashed potatoes, no cranberry sauce.  No Christmas tree.  Instead it was meds, breathing treatments, IV antibiotics, baths, laundry, dressing changes… & grilled cheese sandwiches.  So much for our early Christmas - the truth is there is no time for anything but Emerson’s cares.  Nothing.  I was a little disappointed, but the joy of watching my three beautiful children play & giggle together in the comfort of our home more than outweighed the absence of turkey & pumpkin pie!
I pray you all, too, found lots to be thankful for this year… & if you chose to participate in today’s retail chaos, I pray you found a parking spot, a great deal (or two), & a heaping dose of patience!
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Drowning
Submitted by Erika on Tue, 11/30/2010 - 9:14am.
There are not enough hours in the day to live my life… over 40 doses of medication a day, breathing treatments, formula, TPN, lipids, IV antibiotics, doctor’s appointments, homework, house, sports schedules, Christmas… Bradley gets braces today, I’m attempting to get my hair cut this afternoon, I sit for the state CNA exam (written & clinical) Thursday, Bradley has his holiday concert this week, Collin’s is next week… I’m drowning.  I have no nursing help & the company most willing to help said they’re not able to do so for 2-4 months (pending filed license to bill Medicaid).  I’m drowning…
The doctor signed the DNR – it’s sitting on my kitchen table in an envelope awaiting my signature.  This whole mess is haunting me day & night.
Emerson is doing okay – as bossy & demanding as ever, but relatively healthy - at least for the moment.  I’m recovering from a kidney infection – temp of 103.9 degrees!  Otherwise I’m doing okay – hungry (no time to eat) & tired, but relatively still sane – at least for the moment.
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Busy, Busy
Submitted by Erika on Wed, 12/08/2010 - 10:24am.
My mom’s in town from Michigan this week… Christmas shopping, band concerts, doctor appointments, meds… Emerson is still home & doing okay.  I apologize, but I haven’t had time to read through all the guestbook entries.  I know several people have offered help – thank you so much!!  I promise to catch up after my mom leaves tomorrow.  It’s such a catch 22… I need help but am so busy I don’t have time to reply to those offering it.  I’m going to find time before the weekend though – somehow, someway.  Please be patient with me.  Thank You!

Oh... & how did I forget to mention... I PASSED my state exam!!
Woo Hoo :)

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Where Are You Christmas...
Submitted by Erika on Sun, 12/12/2010 - 2:53pm.
"Why can't I find you 
Why have you gone away 
Where is the laughter 
You used to bring me 
Why can't I hear music play
My world is changing
I'm rearranging
Does that mean Christmas changes too
Where are you Christmas
Do you remember
The one you used to know
I'm not the same one
See what the time's done
Is that why you have let me go."It’s a song by Faith Hill featured in the Grinch movie.  It’s a song that brings tears to my eyes every time.  It’s a song that puts words to the feelings in my heart.
Jim wants to unpack boxes & clean the house.  I want to capture Christmas – somehow, someway.  I’m trying so hard…  I want Emerson to sit on Santa’s lap, I want to see the lights at the zoo, I want to take the boys to the Nutcracker, I want to listen to Christmas music.
I took Emerson to see Santa yesterday (Jim worked).  I lugged the bag of TPN, I packed the meds, I heaved her nearly 50 pound body into the car seat… she sat on Santa’s lap.  I wanted so badly to capture that moment of magic but I couldn’t stop my mind from wandering to all I’d missed.  I couldn’t stop my mind from wandering to all that lay ahead.  I said, with tears welling, “Santa, please spend a little extra time with my sweet girl – this may be her last Christmas”.  He did.  I looked at Bradley watching from afar.  Our last family Christmas he was in pre-school.  He was the one sitting on Santa’s lap, asking for Fisher Price toys.  Today he's in 3rd grade & wants an X-Box 360 Kinect.  I missed everything in between.  I spent Christmases watching a ventilator breathe for my daughter, staring at monitors, obsessing over minute changes in blood pressures… 2 years ago I was told she had only a 50/50 chance of surviving to Christmas day.  I should have been taking Bradley to visit Santa.  I was not.  Those years are gone & I can never get them back.  And God forbid something should happen to Emerson, I don’t know how I’ll ever celebrate this season again.
I want to live in the moment.  I know that's what I'm supposed to do.  I’m trying, but it’s so hard…
In searching through my closet last week I came across a picture of Jim, myself, & an 18 month-old Collin.  I looked at that young woman & wished so badly I could go back & talk to her.  She was thin, happy, & hopeful.  I want to tell her to soak up every moment with that little boy.  I want to tell her to not take one single day for granted.  I want to tell her to stop obsessing over every little imperfection.  I want to tell her she is beautiful.  She never knew it.  She was never satisfied.  She was so innocent & so naïve.  She had no idea what life had in store for her.
I am drawn recently to the news of Elizabeth Edwards’ passing.  I heard it said she never wanted her life defined by the circumstances surrounding it.  She never wanted it said she lost her battle.  Her battle was to live a rich & meaningful life and she did that.  She lost her life, but she won her battle.  I want to live like that.  I don’t want this to define me.  It does though.  Plain & simple – it is who I am.  There is much to be admired about Ms. Edwards’ outlook & I can only imagine in safe, quiet places she was not always so brave.  Her words, though, inspire me find a better way to do this.
Emerson’s labs looked good last week & she’s doing pretty well at the moment.  I’m acutely aware, though, that can change in a split second.  I tip toe into her room every morning praying I’ll find her awake & alert – not listless & lethargic.  I cringe every time her cheeks flush.  She’s been gagging & retching a lot this weekend and undoubtedly needs an x-ray to look at the placement of her feeding tube (which should be deep into her intestines).  I’m not calling, though, because I know any trip to the hospital right now, for any reason, significantly increases the chance for another Christmas spent in-patient.  If this really is her last Christmas it needs to be spent at home – with her family.  I’m doing everything humanly possible to make that happen.  I live in constant, daily fear that it won’t.
That Faith Hill song goes on to say, “If there is love in your heart and your mind You will feel like Christmas all the time”.  Indeed that is the moral to this story & is what I’m coming to realize this holiday season.  Christmas is not about a date on the calendar.  Yes it is the celebration of the birth of Jesus Christ.  And yes, we’ve been taught to believe it’s “The most wonderful time of the year”.  The joy & laughter that ensues though need not be specific to the event.  The month of December is magical… it is also draining – both emotionally and financially.  The months of February & June can also be equally as magical.  It doesn’t all have to happen this month.  If, indeed, we carry love in our hearts & minds, we’ll have the spirit of Christmas with us all the time.  That is the lesson I'm learning today.
Happy Holiday season to you all... I pray that amongst the dinners & deadlines you’re able to pause, release some of your expectations, & embrace the loved ones in your life.  I pray your heart & mind fill with the true meaning of the season & that you carry the “magic” of Christmas with you always.  God Bless!
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Today
Submitted by Erika on Mon, 12/13/2010 - 9:51pm.
Every day I live in constant fear… every day I wonder if tomorrow is the day Emerson won’t wake up.  Today was the day.
The clock hit 12 noon & still I hadn’t heard a sound from her room.  We’d had a busy weekend so I assumed she was catching up on some sleep – until then.  She should be awake by noon.  I tip toed into her room to find her laboring to breathe.  I took her temp – 106.  I called the transplant team, packed a bag, put the dogs in their kennels, & threw her in the car.  We headed north to the hospital.  The ER was expecting us.
About 45 minutes into the 60 minute drive she started gagging.  Then she seized.  It was a grand mal, violent thrashing seizure.  I called her name.  Nothing.  My mind immediately went to the DNR.  Is it happening?  NO.  Not now.  I’m NOT READY YET.
I called 911 while on the road.  They asked me if she was breathing.  Through my tears & screaming I looked behind me… it didn’t appear as though she was.  The seizure lasted several minutes then she went catatonic – stiff arms, eyes fixated on the ceiling.  She would not respond to anything.  She has seized many times before, but I’ve never seen anything like this.  I kept driving (probably not my best decision ever) – I knew she needed to get to the hospital as quickly as possible & didn't want to wait for an ambulance.
The 911 operator stayed on the phone with me for the remainder of the drive.  Emerson was seated behind me in the car.  I honestly had no idea if she was alive or not.  I was racing down the highway… frantic.
We arrived at the ER & they whisked her back to a trauma room.  Her temp was 107 (42 C).  She was acidotic & her blood gas looked bad.  They pushed fluids, bi-carb, started antibiotics…
Fast forward several hours & she is in the PICU.  She’s been asleep all day.  When she alerts it is brief & she is very confused.  They covered her in warm washcloths & her fever has come down some.  Her blood pressures have been all over the place – mostly low, though, with diastolics dropping into the 20s.
No one knows what’s going on.  It would certainly appear as though it’s a blood infection.  We won’t have any more answers, though, until tomorrow at the earliest.  For now she remains under the watchful eye of the PICU team here in Denver.
Hoping & praying for a quiet night.  I’ll keep you posted.
P.S. - The boys don't know what's happening.  If you see them please don't say anything...
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Prayers Answered :)
Submitted by Erika on Tue, 12/14/2010 - 10:40am.
It was a quiet night.  I can honestly say I’m shocked – I absolutely wasn’t expecting it given the way things started yesterday.  Emerson’s blood pressures remained low through the night & they gave several more fluid boluses.  Her temp came down, though, & her blood gases improved.  Her WBC this morning is 36 (high) & all other infection markers are elevated as well.  Her coloring is poor & her electrolytes are messed up.  She continues to run a low-grade fever.  Her Procalcitonin (marker for bacterial infection) which should be less than 0.5 is 12 – critically high.  She’s sitting up, though, & watching TV.  She wants to go “home”!  This child never ceases to amaze me!
She swabbed positive for MRSA (first time) & they suspect that’s what’s in her blood.  She is growing something, but we don’t have final identification yet.  Whatever it is, though, she’s definitely on the right antibiotic.  What a turnaround in the past 24 hours!!  The ICU doc ended rounds this morning by saying, “this little girl has 9 lives”.  The Liver doc corrected him, “more like a hundred, she’s already used up her 9”!!
Emerson will stay in the PICU until we have more information as to what’s going on & they determine her to be ‘out of the woods’ (at least this time).
Thanks for your prayers.  They were answered!!
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Tonight
Submitted by Erika on Tue, 12/14/2010 - 7:26pm.
UPDATE: 10PM
Things seem to be spiraling in the wrong direction tonight.  Emerson's O2 sats have dropped into the low 80s & she's on 2 liters of oxygen.  Her bps are low, her lactate is elevated, & she's not profusing well.  They're starting pressors now.  She is complaining a lot of belly pain & just got a dose of dilaudid.  She is having a very hard time finding comfort.  Her respirations are now in the 90s.  The alarms in this room are sounding constantly.  They tell me her lungs sound good... this is all metabolic acidosis & the most likely culprit is gram negative sepsis. 

Well… things are not looking quite as rosy this evening.  Eme had more bad blood gases & whacky labs.  She is acidotic & her blood pressures, again, were soft today.  She received meds, replacements, & albumin (a human blood product) through most of the day.  Her respirations have been in the 50s & 60s and her O2 sats are starting to drop.  Her fevers have returned.

On top of all that, tests for CMV & EBV both returned positive today.  This is potentially bad news in the transplant world.  CMV is a viral infection that leads to rejection & EBV causes cancer.  Doctors take these 2 infections very seriously in transplant recipients.  She is tested for both monthly & has been for years.  She’s had low levels of an EBV variant before, but has never had the more common form detected here.  She’s never before tested positive for CMV.  Today she tested positive for both.
And to complicate things further, a peripheral blood culture from this morning has returned positive for gram negative rods.  Everyone suspects it’s her Klebsiella.  (The cultures from yesterday were positive for gram positive cocci - probable MRSA.  She now has 2 different bugs growing in her blood.)  The unfortunate news about a positive peripheral culture is that it means the infection is not isolated to her line – it has gone systemic & seeded her blood stream.
Add it all up & she’s got MRSA, CMV, EBV, & (likely) Klebsiella – all detected within a 24 hour period.  Unbelievable!!!!!
Emerson is feeling miserable tonight.  Her cheeks are flushed, her little eyes are nearly swollen shut from all the fluid she’s been receiving, & she’s struggling to get comfortable in any position.  She’s breathing fast & hard.  She slept most of the day today & wants desperately to do so again, but can’t.
That’s the news from PICU 6 in Denver.  I’ll keep you posted as things change.
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Wednesday Morning
Submitted by Erika on Wed, 12/15/2010 - 10:37am.
Emerson’s respirations continue at 90-100 times per minute & did so throughout the night.  She’s working hard to breathe & has little reserve left to fight this infection.  On x-ray this morning her lungs are filling with fluid & she has pockets of fluid forming around them as well.  They’re aggressively treating with lasix to try & pull some fluid off.  Her bowel sounds are nearly non-existent & her belly pain is concerning.  They’ve ordered an x-ray of her abdomen for now.  They want to avoid transport to CT if possible given her current status.
We’re trying to avoid intubation this morning, but it’s definitely being discussed.  My mind can’t help but wander back to October 2008 – she presented with gram negative sepsis, she was uncomfortable, laboring to breathe… they waited to intubate & she coded.  Most of you know the story from there.
As hard as I tried I couldn’t hold back the tears this morning during rounds.  I think they heard me… I think they know I’m scared.  They don’t know Emerson like I do.  They don’t know bowel transplant like Omaha does.  They’re great doctors, I don’t question that at all.  They have a lot of experience with very sick children.  She’s in a good place.
I’ll update again in a few hours or sooner if things change.
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Big Day
Submitted by Erika on Tue, 03/15/2011 - 8:34am.
UPDATE (8:00pm)
We made it the PICU.  Here’s what I’ve been told:
Eme’s roux (the portion of her transplanted bowel connected to & supplying blood to her transplanted liver) was “floppy” & twisted on itself.  There was ZERO peristalsis in the upper portion of her bowel.  Peristalsis (muscle contractions) should be easily seen in a properly working bowel.  She had none.  The combination of the two explains all her bilious vomiting over the past several months.
Dr. L essentially removed Eme’s remaining stomach.  He left a very small pouch that will hold about 1 tablespoon of liquid simply to preserve the connection to the intestine.  He removed her roux and the upper portion of her bowel.  It was a bit tricky to know exactly where the bowel went from bad to good, but he judged as best he could.  He created a new connection between the bowel and liver & repositioned her feeding tube.  He said the remaining bowel “looked” good & there was visible peristalsis.
I asked if he left enough bowel to absorb feeds.  He doesn’t know.  I asked if this will fix her problems.  Again, he doesn’t know.  Time will tell.  It needed to be done, though, & should certainly help with her vomiting.  He said he’s seen many bowels with chronic rejection & it didn’t look like that.  The explanted bowel, though, will be sent to pathology for closer examination.
Dr. L opened Eme up along her transplant scar & made the decision not to close.  He left the incision open.  I was told that’s to facilitate future trips to the OR if necessary.  As I’ve said many times in the past… the surgery is the easy part.  It is the next several days that could be difficult & will ultimately tell us how she’ll handle this.  There is significant risk for perforation & sepsis.  Either would potentially require another surgery to wash out her abdominal cavity.  If she can avoid the OR through the weekend they’ll likely place a wound vac next week.  
Much to the surprise of many, Emerson successfully extubated in the PACU.  She transferred to the PICU breathing on her own!!  She has an arterial line in place to measure blood pressures and numerous IVs with all sorts of things dripping in.  Her stomach tube has been draining blood & she looks very pasty.  She’s awake, though, & really, really thirsty.  She wants water in the worst way but can’t have any… she’s not a happy camper!  Otherwise, she’s having a hard time getting comfortable.  She wants the head of the bed up & has her knees pulled to her chest.  They’re giving her some more pain medication which will hopefully help her find some comfort & rest.
Speaking of comfort & rest… I’m hoping to find some myself tonight!  I’m not quite sure what to expect tonight, but was told she’ll probably do fine over the next 48 hours.  It’s after that when things tend to fall apart.  One day, one hour at a time.
More tomorrow…

 

UPDATE (4:30pm)

All continues to go well... hoping to talk to Dr. L soon.  He'll come out before the procedure's completed - his fellow/resident will close Emerson up.  More after I talk to the doctor.

UPDATE (3:30pm)
The surgery liason popped into the OR & came out to tell me Emerson is doing well.  Two thumbs up from anesthesia :)

UPDATE (2:30pm)
Emerson wheeled back to the OR a little after 1:00.  They called to say they'd made their first incision at 2:00.  Expecting another update in about 30 minutes...
Eme was in good spirits today!  She got pretty upset in pre-op though.  She's way too familiar with this routine :(

Surgery is at 12:45… I’ll update from the waiting room.  Thanks so much for all your prayers & messages of support.
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Wednesday Night
Submitted by Erika on Wed, 12/15/2010 - 8:05pm.
Eme's blood gas was improved this evening, but her chest x-ray looks much worse.  Her left lung is nearly filled with fluid & moving little air.  Her right lung is wet & breath sounds are diminished.  She continues to breathe upwards of 90 times a minute – undoubtedly due to her lack of lung capacity.  She’s still compensating well, though, & is able to exhale the toxins from her body (hence the improved blood gas).  I keep thinking it can’t last much longer, but she continues to fight… hard.
They are watching her closely.  She’s breathing on her own.  I’m increasingly in favor of intubating in order to allow her more energy to fight this infection.  The PICU docs, though, are afraid if they intubate they might not be able to extubate.  We made some med changes this morning & I’d hoped that would turn things around.  Her fever tonight (104), though, through Tylenol, is higher than it’s been in days.  She’s screaming in pain (abdominal) and just received another dose of dilaudid.  The abdominal film from this afternoon showed an absence of any gas in the bowel & fluid in the abdominal cavity.
I was feeling a little better about things with the improved blood gas, but am fearful again due to the return of this nasty fever.  It tells me we don’t have a handle on this infection – and she’s on just about every possible antibiotic.  Has her Klebsiella finally gone resistant to everything?  Indeed that is my biggest fear right now.
A huge part of me wants to believe she’ll be okay… it always seems to work out that way.  She’s one of the strongest little fighters I know.  Praying history repeats itself this time.
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Thursday Morning
Submitted by Erika on Thu, 12/16/2010 - 12:58pm.
I’m sad to say the news this morning is not great.  Emerson is on very powerful antibiotics & the infection continues to take over her little body.  We don’t have a handle on where it’s coming from & we haven’t made any progress on controlling it.  The infection markers in her blood look worse this morning than they did Monday when she admitted.  Her Procalcitonin (marker for bacterial infection) which was critically high Monday is even higher today.  Her WBC continues to rise & her platelets continue to fall.  Her CRP is increasing as well.  She continues to breathe rapidly & is finally wearing out.  She is so, so tired.
Her chest x-ray looks a bit improved, but her blood gases are now declining.  She’s not able to effectively rid her body of CO2 anymore.  One doctor said we would intubate this morning, the other wants to hold off as long as possible.  I was in favor of intubating yesterday & continue to want to do what’s best for her.  Today, though, I’m more inclined to wait.  This infection is making me nervous.  The longer she can maintain some amount of bodily function on her own, the more I remain encouraged she can do this.
Both the gram pos & gram neg bugs are still growing in every culture.  She’s been on adequate coverage for the gram pos since Monday, still though the bug is present.  We have no idea what, if anything, the gram neg is sensitive to.  We still have no information from lab.  When it takes this long to get sensitivities back it’s never good news - it means nothing they are trying is working.
The plan for today is an echo & a full body CT scan.  The hope is to find some localized pocket of infection that could be continually reseeding her blood.  We also need to get a better look at her kidneys – again they are an assumed source for her Klebsiella.
They continue to support her electrolyte losses & monitor her breathing and blood gases closely.  I’ll let you know how the day goes.
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Thursday Night
Submitted by Erika on Thu, 12/16/2010 - 10:14pm.
Not too much to report.  Emerson’s blood gases aren’t any better, but they aren’t any worse either.  The organisms in her blood have been identified as a MRSA & Klebsiella.  The Kleb, as expected, is highly resistant.  Infectious Disease added some additional antibiotics today & increased the dosages on all others.  The meds she’s on should be killing these bugs.  They are not.  We’ll see what things look like tomorrow with today’s changes…
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Friday Morning
Submitted by Erika on Fri, 12/17/2010 - 11:06am.
The news this morning is mixed… Emerson’s blood gases look a little better, but her chest x-ray (which looked better yesterday) looks worse again today.  Two of the infection markers in her blood are slightly decreased, the others are increased.  The echo from yesterday was clear & the CT scan showed several pockets of fluid, plural effusion (fluid around the lungs), pulmonary edema (fluid in the lungs), & fluid in the abdomen, but no localized abscess (pocket of infected fluid).
Blood cultures continue to return positive for Klebsiella & as of this morning there is yet another bug growing.  That makes 3 in total - MRSA, Klebsiella, & now enterobacter (a gut flora).  Her ostomy output was up markedly yesterday.  That, in conjunction with this new gut flora has prompted the team to schedule a scope & biopsy this afternoon to rule out rejection.
Her O2 requirements have increased & she continues to spike fevers.  Her breathing continues to be fast & labored, but from a glass half full perspective she appears to be a bit more comfortable this morning.
She is on antibiotic coverage that should be killing all the bugs in her blood stream, but it is not.  Today Infectious Disease will add more antibiotics to try & achieve better synergistic results.  She is requiring around the clock electrolyte replacements & the PICU team started her on several new drugs today to help manage the losses.  She is also receiving scheduled lasix (a diuretic) to help control her fluid status.
There is zero chance she’ll be home for Christmas or New Years.  I’m starting to accept that today…  My great hope now is that she can stabilize enough for me to spend time with the boys over break.  Jim took the week off work next week & is taking them boarding (they’re learning this yearJ) up in the mountains.  That will be a nice distraction for them.
To all my dear friends & family – your Christmas gifts are sitting at home on my pool table.  They’ve been thoughtfully purchased, but are not wrapped & will not be shipped in time for Christmas this year.  Please accept my sincerest apologies.
Thank you for all your prayers… I’ll keep you posted.
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The Morning After
Submitted by Erika on Wed, 03/16/2011 - 9:46am.
Things, all in all, are going well.  The main issue has been pain control, which is to be expected.  The team this morning tripled Emerson’s dose of dilaudid, so hopefully she’ll get some rest today.  Her white count this morning is 40 & her liver numbers are elevated – also not a huge surprise.  They drew blood cultures from all her lines, though, just to be sure nothing is brewing.  The blood from her stomach has stopped & she maintained her hemoglobin overnight, although she still looks very pale.  She’s been trying to vomit all morning but there’s nothing in her small stomach to come up.  I was told that may indicate some damage to her diaphragm.  It should be temporary.
I was surprised today to find Dr. L did not enter through Eme’s transplant scar (side to side), but instead made a new incision top to bottom.  It is gaping open and the skin is rolling outward – it doesn’t look like it will heal well.  Quite frankly, it’s pretty ugly.  Not a big deal, I know… she was in no danger of ever wearing a bikini anyhow… just not what I was expecting to find when we peeled back the dressing this morning.          
From here we wait… wait to see how she does over the next several days.  At the moment things seem to be going pretty well.  Most were really surprised to see her extubated & breathing on her own this morning – that’s a great way to start!!   
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Friday Afternoon
Submitted by Erika on Fri, 12/17/2010 - 3:38pm.
Infectious Disease just came in & said Emerson has pneumonia.  It’s most likely one of the bugs growing in her blood, so they’re not changing antibiotic coverage this afternoon.  We continue to watch & wait…
I don’t normally like to post pictures of her when she’s sick, but here she is today – struggling to breathe but continuing to do so on her own.  Hoping for a much improved picture by Christmas time!
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Saturday Morning
Submitted by Erika on Sat, 12/18/2010 - 11:26am.
Pneumonia/chest x-ray is unchanged, but effort of breathing may be a bit better… lab work this morning looks betterJ… fevers, though, persist… blood cultures from yesterday (5 days on big gun antibiotics) are still positive for Klebsiella & what they now suspect to be a VRE (another resistant organism)L.
Emerson continues to sleep most of the day.  She alerts only briefly to ask for “ice” (water) or to point to the TV.  She never stays awake long though.
Overall, I’m encouraged by her blood work this morning.  It gives me hope that the antibiotics are beginning to penetrate this infection.  All her makers for infection are down.  That’s good news.  It is still very concerning, though, that we can’t get a negative blood culture.
The plan today is to add yet another antibiotic.  At this point they’re throwing things at her to try & find a combination that will work.  The next drug interferes with the level of her anti-rejection medication.  I pray now that in “fixing” one problem we don’t create another.
Emerson had a scope & biopsy yesterday to look at the condition of her transplanted bowel.  To the eye it looked “okay”.  We expect the pathology report back this afternoon.
Merry Christmas to my family in Michigan - Mom, Dad, Geoff, Melissa, Cate, & Grant - who are celebrating together today!!  I wish I could be there!!!!!
Happy Saturday before Christmas to you all!
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Saturday Night
Submitted by Erika on Sat, 12/18/2010 - 11:11pm.
Emerson’s blood cultures from this morning returned positive for klebsiella & enterobacter in less than 12 hours time (that’s fast).  As a result, she was whisked off to surgery this afternoon to have her line pulled & replaced with a temporary central line in her neck.  The team had hoped to avoid that as we are quickly losing line sites, but after 6 days of persistently positive cultures they had no other choice.
Emerson did well in surgery, aside from a few low bps requiring a dose of rescue medication.  She remains on O2 & has been febrile all day.  She continues to require frequent electrolyte replacements.  Her little body is tired.
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A New Day
Submitted by Erika on Sun, 12/19/2010 - 8:16pm.
Emerson is looking a little better today!  I think pulling the line may have been the answer to finally getting the upper hand on these nasty bugs.  Her lab work was still off, but my hope is it’s just lagging a little behind.  Eme was awake more today & even mustered the energy to draw a little pictureJ.
I asked what the criteria is for moving to the floor – I’m a little anxious to get out of the PICU!  My question was met with blank stares… apparently it’s not happening anytime too soon (can’t fault a girl for asking)!  The team said she needs several days of negative blood cultures & stable respiratory status.  She continues to breathe hard & fast with head bobbing & chest retractions.  Further, there is concern she may be too “busy” to move to the floor.  She’s on 56 doses of medication a day not including 4 IV antibiotics, each dosed every 4-6 hours, TPN, lipids…  In the PICU nurses only have 1-2 patients at a time.  On the floor they have 3-4.
I know we won’t be home for Christmas, but my hope now is that we can be out of the PICU.  Siblings under the age of 12 (which include both Collin & Bradley) aren’t allowed in the unit.  They’re making an exception on Christmas day, but they’ll only be allowed back one at a time, & that will make it pretty much impossible to celebrate Christmas together this year.  I don’t think I’m asking for much… just a day with all my babies together in one room… a Christmas day with us all together.  It hasn’t happened since Emerson was born, 4 years ago!
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Christmas Blessing
Submitted by Erika on Tue, 12/21/2010 - 1:49pm.
Emerson continues to improve… slowly, but steadilyJ.  Her lab work looks better & her breathing is easing as well.  Her fevers continue, though, with daily spikes over 102 (39 C) through Tylenol.  The plan this morning is to wait one more day.  If fevers persist we’ll discuss an upper endoscopy to look at the top portion of her intestines & a bronch to sample the junk in her lungs.  Both procedures would be done in the OR.
In happy Christmas news, I pleaded my case to the new docs on service this week.  They heard me!  Plans are in the works to transfer to the floor (maybe as early as tomorrow)!!  And... they're trying to get us in the BIG room (plenty of space for a tree & 3 crazy kids on Christmas day)!!!  Eme’s busy but stable & everyone is wonderfully trying to accommodate my Christmas wish for this year!!  A million thanks to all involved!!
The course of antibiotics will be minimum 2 weeks from Sunday, which puts us at an earliest possible discharge date of Jan 3rd.  I’m not banking on it though, a lot can happen between now & then.  For today I’m just looking to Saturday & am feeling beyond thrilled and blessed that we may all be able to celebrate together this year!
I’m driving home to wrap gifts this afternoon… look out TCH, I’m bringin’ em in by the wagon full!!  Can you see the smile on my face?  It's big!!
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Wonderful!
Submitted by Erika on Mon, 12/27/2010 - 10:37pm.
That was our Christmas Day!!  “Best Christmas we’ve had in a long time”, Jim said.  I totally agree.  How can Christmas in the hospital possibly be wonderful?  I suppose after years on end of living in a hospital your sense of “wonderful” gets a little warped.  The fact is Emerson was not in the PICU and she was not on the vent.  She was present & excited, and most importantly we were all together.  The little fact that we were together in a hospital room seemed to go unnoticed by all in this familyJ.
I met Jim & the boys in the mountains on Christmas Eve day.  We went snow-tubing at Keystone (soooo much fun) & enjoyed a fondue dinner in downtown Breckenridge.  Collin returned to the hospital with me that evening.  Jim & Bradley stayed in Breckenridge.  They woke up early Christmas morning for a ceremonial, first-annual Christmas Day black diamond run, then drove down for the festivities.
Rather than try to put words to the day I’ll let the pictures speak… they say it perfectly!  I apologize if you’re unable to see them all – I’ve been working on uploading them for hours & am beyond frustrated this evening.  (I’ll talk to someone at COTA tomorrow.)
I pray you all, also, enjoyed a day filled with excitement and wonderment, surrounded by those you love most!

Emerson remains on the floor, but is spiking fevers again today.  They’ve started anti-fungal coverage.  I’ll update more on her soon… for now, though, know she’s doing okay.

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New Year's Eve
Submitted by Erika on Fri, 12/31/2010 - 4:01pm.
My heart & thoughts tonight are with those who face medical challenges & unknowns in the new year.  To Ashley Kate, Kylie, and their families I pray for strength & patience that surpasses all human understanding.  To all others in similar situations, including sweet Eithene, I pray for comfort.  To Lily & all our transplant friends (too many to name individually) I pray for health, growth, & a year full of childhood firsts.  To all mothers & fathers who've lost their transplant babies I pray for peace.  And last but far from least, to all mothers & fathers who in their most difficult hour said "yes" to organ donation, I pray this year brings comfort in knowing how deeply loved & appreciated they are.  I speak for all transplant parents when I say thank you.  You are our heros.  You saved our lives.  We know it was not easy & we are forever, eternally grateful to you for your selfless decision to spare another family your same pain.  I may never know Emerson's donor families... I may never see a picture of the children who saved her life.  I will carry them in my heart forever, though.
There is a young man by the name of Sam, high school senior, who was recently found unconscious on his bathroom floor.  He was a star three-sport athelete in excellent health & died of a presumed brain aneurysm.  He played hockey in the same organization as Collin & his mother is a teacher at the boys' school.  His death was both shocking & completely unexpected.  In the difficult time to follow the initial incident, Sam remained on life-support so his family could donate all his organs.  He was undoubtedly an excellent candidate for donation & thanks to his parents saved the lives of many others.  I can never know the pain & heartache they carry with them & can only imagine how difficult the holidays were this year without their son.  I do know, though, the gift they gave when they said "yes".  There is no gift greater than life.  Cheers to Sam's parents & to all other donor families this New Year's Eve. 
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