Waiting to hear from UNOS

Dr. Alonso wrote UNOS yesterday asking for Shelby's PELD to go from a 25 to a 30.  Dr. Alonso also said that she thinks we need to a get a living donor worked up.  I said to the nurse "That means Dr. Alonso is saying Shelby is very sick."  She said "Yes." :-(   I will fill out the living donor packet and send it in and wait to hear from Northwestern on when my testing will take place.  Somehow, somewhere (soon) we need to get this kid a liver.

O2 all the time :-(

Tuesday we had a heck of a time keeping Shelby's oxygen levels up.  They were in the low 80's to high 70's range with just a tad bit of movement.  We kept having her sit when her lips turned purple and her hands turned dusky only to have her sats go up to 88-90%, then immediately fall again when she started moving.  I called this info into Chicago the next morning and the pulmonologist ordered her to be on 2 liters of continuous oxygen and upping it to 5 liters (if needed) if her sats fell below 88%.  We found out after a few minutes of her being on the O2 and then checking her sats that 2 liters was NOT enough to keep her above 88%.  Since then she's mostly been on 3 1/2 - 4 1/2 liters.  :-(  Monday her doctor will be writing another letter to UNOS asking for more exception points in light of Shelby getting sicker so quickly.  Prayers, please, for a "new" liver soon.  As much as I love the comforts of home, I'd rather be sleeping in an uncomfortable hospital chair if it meant my daughter having a chance to be healthy.

Sat monitoring update

Shelby did the 6-minute walk test…twice.  The first time (which I’m sure is standard for the test) they told her to go at her own pace and there was a chair if she felt she needed to sit.  Shelby was not thrilled about the test at all so she sat…3 times.  She admitted to me later that she did not want to do the test so she didn’t try very hard.  I got on the phone with one of her liver nurses and expressed my concern that we were not caputuring her daily activities and the low sats that accompany them….so what was the good of this whole admission?!  She got the test reordered.  Shelby did the whole test without sitting.  I let her pick out a stuffed animal from the gift shop for her effort.  My LF friend, Noelle, was visiting and was a FABULOUS cheerleader.  Thank you Noelle!  So the lowest she went during the test was 81%, but she has had sats as low as 78%.  For now, we are in the Brown Family Life Center to keep her moving and we keep spot checking her.   We should be discharged just in time for rush hour traffic…on a Friday…yay…not!  Thank you all for checking in on us!

Actually I wrote this and then Shelby’s tummy started hurting so we headed back to the room.  She’s pooped; done for the day.  I’ve asked if they can expedite our discharge so we can get a little ahead of the traffic.  They’re working on it.

Fun with Funny Bones Improv that performed at the Brown Family Life Center

Met Minnie & Mickey (again)

Mickey taking interest in Shelby's Headbanz game

Shelby and one of the dj's from Radio Disney

Another Radio Disney dj

Shelby and Noelle, Jack's Mom, from Liver Families

Shelby and the respiratory therapist doing the 6-minute walk test

Planned Admit

Shelby will be admitted to CMH tomorrow for the monitoring of her sats.  They will most likely have her continuously hooked up to an oximeter and she may possibly have a blood gas drawn.  We pray that the doctors get the data they need to be able to get more exception points for her from UNOS.  Just the two of us will be heading in as Daddy's school/work schedule is VERY full right now.  I'm so lucky to have Scott to tag-team during hospitalizations and I know this isn't a "sick" admit, but I would appreciate prayers that I handle everything well.  I remember how lonely it was being in Chicago with Shelby in 2009 when she was taken in by ambulance and waiting (gasp! making fun of myself here!) a day-and-a-half before Scott could make it in.  Please pray for strength for her if she has to have a blood gas drawn (arterial stick in wrist - yuk!). 

RILEY TURNED 12 YESTERDAY!!!!  Here are some pics of our beauty!  Love you Ri!

Decline

Shelby's sats have gotten worse lately.  :-(  Her baseline sats will go to 90-91% if she sits for a while, but while she's on the move (just regular movement around the house) they drop down to the 75-79% range.  NOT GOOD.  Chicago is trying to work out an admit for next week so they can monitor her sats and have them on record to ask UNOS for more exception points.  Her lips will turn very purple and her hands have been turning dusky.  She is still our Shelby; pushing everything to the limit, not backing down.  In private, though, she'll admit to me that she is having trouble breathing. Trouble playing at recess, going up and down the stairs, etc.  Tonight is Riley's birthday slumber party and Shelby asked me to bring her oxygen down to the living room so she can have it when she sleeps tonight.  :-(  Please, new liver, its time.  We NEED that call.