Christmas in July?!?!!!

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.

Happy?

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.

Sweet & Innocent

Sweet & Innocent
Sweet & Innocent

It’s all an act!

Sign Language

Sign Language
Sign Language

Love You!!

If only I could post a video clip

…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!

Plans for Today

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!!

Detroit Medical Center

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!

More bad news

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!!

It's Happening

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!!

So OVER all the Drama!

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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