Night went well

6:04 p.m.
Heard from the nurse.  They want to see how she does in the next 24 hours and the "team" is trying to decide if she's better off at home or in the hospital.  They do not (nor do we) want her to go into acute respiratory distress here at home.  I did "experiment" and put the oximeter on her when she came out of the bathroom, had her walk up about 5 stairs and then read her sats.  They were 80%...on 4 liters of O2.  This sucks.  If its best for her to be at CMH, then so be it.  We'll see what the next few days bring...

4:06 p.m.
Our little friend, Jaisal, has his old liver out and the "new" one is going in!  His donor is already in recovery and smiling!  Turns out Jaisal was the other child with blood type A waiting at Children's for a liver transplant.   When I said last week that Shelby was in the top 2, it was because she and Jaisal had the exact same score.  Now that Jaisal is receiving his liver, Shelby is not only in the #1 spot at Children's, but in our region.  Yes, I do feel the need to repack my bags and am in "nesting" mode.  All the laundry is done and I'm making sure my desk is cleaned off.  Of course, poor Scott has a final tomorrow and Wednesday...he's just a little more than stressed.


Still no word from the nurse.  I gave her a call to check on things and Dr. Alonso has been in meetings all day so she hasn't seen her yet.  She said she would call me back today still...

10:26 a.m.
Thank you everyone for your prayers!  I felt surround by them last night.  Shelby slept great!  In fact, she has PINK lips this morning.  Unfortunately, it just reinforces that she does need MORE oxygen and bed rest to keep her stable.  What a bummer.  I think we're still going to be able to stay at home.  I'll know for sure this afternoon when I hear back from the transplant nurse.  The Hepatologist and Pulmonologist need to talk and decide what they think is best for Shelby's body right now.  I am still comfortable caring for her here at home, but will totally understand if they want her to be admitted.  Of course, that would mean she would stay admitted until she gets a transplant.  This is all very surreal right now.  I really can't believe that we are caring for our oxygen dependent daughter while she's waiting for a liver transplant....just sounds like someone else's life.  Sigh...

Hopefully right now our little friend, Jaisal, is preparing to head to the OR at Children's to receive a portion of his Dad's best friend's liver.  I haven't seen any updates yet so please pray for this family.  A few weeks ago Dad was to be Jaisal's donor, but when they opened him up for surgery they found they could NOT use his liver. :-(  A rare thing to happen after all the screening they do on living donors and a HUGE disappointment.  


That's all for now.  I'll update when I hear back from our nurse.