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Repeat blood cultures from this morning are still positive.  Really, really hoping for a better plan tomorrow…

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.

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 4^th 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!

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.

Temp 39.2 (102.6), blood pressure 65/34 (very low), surgery cancelled.  So close…

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…

Nothing much new to report… Emerson is up 3 full kilos since admission (over 6 ½ pounds), & she’s looking very puffy.  They’re starting some meds today to help her kidneys clear the extra fluid.  She is on full feeds & would otherwise be able to come back to the Lied with me for a few days, but we don’t have her outpatient meds yet.  She’s on Colorado Medicaid & as such all her meds must be shipped from a pharmacy there.  They should be here tomorrow then we’ll go back to my room for a few days.  She re-admits Wednesday for surgery #2.

She’s been a real treat these past few days – yelling at me, throwing toys at my head, slapping me across the face.  They tell me she’s an angel when I’m gone, but starts screaming the second I walk through the door.  How I long for the day when I can enjoy her again… for now there’s not much “joy” in our interactions.  She needs to be disciplined, but I can’t do it here.  It’s hard raising a child in the hospital.

We spent time with a special transplant friend last night (in from Louisiana for her annual appt).  I really enjoyed catching up with another transplant mom, & Eme & I both enjoyed the break from our daily routine.  Kylie looks good & while the road ahead is uncertain, it’s really great to see another transplant recipient out & enjoying life.  It gives us lots of hope!

Collin & Bradley left for Michigan Friday & I enjoyed a fast and furious week with them both... they're busy little (correction: not so little anymore) boys!! 

For those who've asked… here is our current address:

Erika & Emerson White/Room 7726

Lied Transplant Center

987600 Nebraska Medical Center

Omaha, NE  68198-7600 

It’s been a pretty uneventful few days… not necessarily a bad thing! Emerson is at 40 now on feeds & remains on TPN for supplemental nutrition until she reaches her goal of 75.  Her bladder tube is looking a bit angry & is causing her some discomfort – I’m hoping that will improve with time.  The next surgery is scheduled for June 17^th.

Thanks to a wonderful volunteer here I’ve been able to take some time away each day… thanks also to some wonderful friends here I’ve been able to get out!  The boys are coming tonight – Jim is staying 2 days & the boys will stay through the end of next week.  From here they’ll go to Michigan to spend the summer at the beach with Grandma & Papa  – lucky themJ!

Finally, a giant thank you to 2 of our very special Omaha angels – Dave & Jan… together with the help of members from the King of Kings Church, they’ve paid my Lied room for this entire admission.  What amazing people we’ve met on this journey!  Indeed we are blessed.

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…

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…