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...