2010 Fundraisers

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!

...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…

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…

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…

Hamming it up with Minnie

Notice the lipstick marks on my cheek?  They're princess kisses :)

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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