Exception points DENIED

Yes, I found this out while driving in for Shelby's cardiologist appointment.  First of all, her heart looks great.  We just need to keep it that way.  UNOS denied the exception points because they wanted an arterial blood gas reading.  It has to be below 60mmHg for them to give her the exception points.  A LOT of strings were pulled while we were there Tuesday and it was worked out that she could have the ABG drawn.  An ICU attending was available to do it.  They had her walk on the treadmill for a few minutes and her sats fell to 78%.  Then she sat down and they started the draw.  They didn't get it the first time and by the time they did get it she had been sitting long enough that her sats were back to her baseline of 90%.  She was such a trooper through such a painful procedure.  Sadly her ABG was 64.5 - low, but too high to submit to UNOS.  Her team is talking and trying to figure out what to do next.  They feel it shouldn't be this hard to get her exception points.  We agree.  Today is the first time she's gone to school this week.  She's just been too tired the other days.  Her appetite has been poor and she has lost 2 pounds in 2 weeks.  This is something we need to keep a close eye on.  I had a thirty-one open house Tuesday night and she was at 110% because she was so excited to see a favorite person from her old school, but promptly dropped on the couch when the last person left.  Poor kid.  I am getting mad at her liver.  I am thankful it has held together so many years, but angry to see what it is doing to her now.  C'mon exception points...

Cardiologist

We have to be in Chicago tomorrow morning for Shelby's annual visit with the cardiologist.  Usually these are long, hum-drum clinics, but we actually have something to talk about now - her Hepatopulmonary Syndrome.  We're looking for more direction on how much/how often with the use of the oxygen.  Shelby's sats have been dropping even lower.  We've had her on as much as 4 liters of oxygen at night.  That's up quite a bit from the .5 liters we started at about a month ago.  I'm afraid her HPS is progressing rapidly.  :-(  This is such a scary time, but I try to focus on all the good that will come for Shelby when she gets a healthy liver.  We still have not heard on her exception points being granted.  She's only been listed for 11 days; UNOS has 21 to respond.  Sigh...time for my girl to get healthy.  She went to a birthday party Saturday afternoon and it took her until this afternoon to get her strength back.  That's not good....

Tuesday Ultrasound

Yesterday Shelby had an abdominal ultrasound so the surgeon could see what's going on in there - a little pre-planning and sneak-peak for transplant.  All went well, I think.  There was some question about whether or not her portal vein was seen.  Its pretty darn important.  We'll see what they say.  It doesn't change her need for a transplant, but it could change what type of graft she can get.  Right now (before the ultrasound) it was a whole or split liver.  That might change if there's problems with her portal vein.  

We walked - well, 3 of us walked, 1 was in a wheelchair and 1 in a stroller - around the Lincoln Park zoo.  My Mom had not been there and throughly enjoyed it.  She took tons of pics, but I'm too tired today to put them on here.  We also stopped by Build-A-Bear because it was very important to Shelby that she make her own bear.  She still loves Lovzey & Keisha (her other 2) very much.  I figured the kid deserves another if she's going to have to go through a transplant.  'Nuff said.  She only made it half the day at school today.  Too tired.  After she eats lunch, I'll have her put on her O2 and lay in our bed.  I'm ready for her to feel better.

ON the waiting list

Just got a call from Chicago that Shelby is ON the waiting list. Right now her PELD is -5, but they are appealing for a new "score" of 28 due to the Hepatopulmonary Syndrome. Amazingly calm at this point.

The Evaluation

We do a lot of waiting!

Shelby with Dr. Jill & the flower she brought her from Grammie & Papa's garden

Yesterday was incredibly l-o-n-g, but a lot was accomplished.  We met with all the members of "The Team."  The Transplant Team, that is.  From 1:15 - 5:45 one after another would come and talk to us; when they left, the next came in.  It was exhausting.  Shelby did really well.  We still have to go in for an abdominal ultrasound before transplant, BUT I should hear today or tomorrow that she is on the waiting list.  This is a scary time for us.  Exciting, too.  Scary because transplant is such a big thing.  Very risky.  Exciting because Shelby will no longer have liver disease and will feel better with a successful transplant.  Because of her Hepatopulmonary Syndrome, the doctors will be asking UNOS for 28 points on the waiting list.  We shall see what she gets....I will let you know when it is "official."

She only made it about 45 minutes at school today before she needed to come home.  Yesterday exhausted her.  Today she is resting in our bed, wearing her oxygen.  Hopefully she just needs this "recharge" time and we pray that she can return to school tomorrow. 

***Scott just informed me that he could not comment on here.  I forgot to change that setting back to how it was.  I think I have it fixed now. :-) ***

They know

We realized that Scott didn't have to work tonight AND heard the final word from Chicago so we told Riley & Shelby after school.  They took the news amazingly well.  Shelby started to cry & wanted Riley (we had taken her to our room to tell her on her own).  Once she hugged Riley & knew that her sister knew, she completely changed her tone and was joking.  Both of them seem o.k.  Better than Scott & I.  We let them know that it was o.k. to ask any question.  Then they wanted to go play.  Wow, wish I was that resilient.

The ball is rollin...

I got a call late this afternoon that Chicago wants to see Shelby Tuesday for her transplant evaluation!  I think they sped things up after I called today letting them know that the past few days she has been purplish on the inside of her lips and her sats have quite often been only 84%!  The pulmonologist said to have her wear her O2 more at home and today when I got them from my Mom's after school, she was so tired she wanted to ride in the wheelchair (my parent's have one) home.  Umm...we only live next door to them.  I hate seeing her like this!

Scott & I are so nervous to tell her!  We're going to do it Saturday morning over donuts and we'll tell Riley & Shelby separately.  This sucks....