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!!