what a day...

Elise had "liver clinic" today.  I was actually really looking forward to our appointment today, since I feel like Elise has never looked better in her life.  Her skin is pink, her eyes are clear and white, she's gaining weight every day, and I was very optimistic that her labs would be looking good too.  And I was right... her liver panel has never looked better.  Here are the results:

ALT: 145
AST 52
Alk Phos: 317
GGT 496
Albumin 4.7
Conjugated Bilirubin:  0.0

Her weight today is 13 lb 8 oz; her height is 25 in.  She is now in the 10th percentile!!

So, as Dr. Fishman settled into the the exam room, I couldn't wait any longer to ask, "So do we get to lose the NG tube????" To make a long story a little shorter, his answer was "no."   And he went on to say, "You're probably going to like what I have to say next even less."  Really?  I said, "Let's have it."  Then "BAMB!"  The next words out of his mouth felt like a kick to the gut....

Dr. Fishman said, "With your permission, I'm going to refer Elise to our transplant team."

He let those words sit with me for a second, then went on to say that I need to hear him out so he can explain his rationale, and that he would then be happy to answer any and all of my questions.  But first, he opened the door and let the "transplant coordinator"-- Julie-- into the room.  Wow.  This was all happening very fast.

So, as I sat in the room, holding Elise, and talking to Dr. Fishman and the transplant coordinator, Dr. Fishman explained that he suspects Elise has portal hypertension and may be starting to develop Ascites.  These conditions can cause very serious complications such as varices, GI bleeds, respiratory distress, and right-sided heart failure. I challenged him, pointing out that Elise's ultrasound earlier this month indicated "no ascites" and showed no evidence of portal hypertension.  Well, Dr. Fishman responded by admitting it is very early, and he's just beginning to notice some tell-tale signs that this is the direction in which Elise is headed....not necessarily that she already has these diagnoses.

Dr. Fishman went on to say that he wants Elise thoroughly evaluated by the transplant team and listed for transplant so that she can start accumulating time on the list.  The more time she has on the list, the more "points" she can earn towards a higher PELD (Pediatric End-stage Liver Disease) score, which will be critical to ensuring that she can get a new liver when the time comes that she really needs one.  Dr. Fishman said that he would rather have her listed too early than wait too long to list and have her get so sick that she might not tolerate the transplant as well as she could.

Well, I suppose that rationale is about as good as I could have asked for.  It makes sense. I can't really argue with it.  Dr. Fishman made himself a little more comfortable in his seat before asking, "So, do you have any questions."  "Well, as a matter of fact I do...."

about 45 min later.....

I emerged from the exam room, sat down on a sofa in the clinic, and fed Elise a bottle just like I have done every day since she was born. It was like I didn't even just receive information that will quite literally change our life.

While transplant will certainly change our life, I have tremendous faith that it will be a change for the better.  We will no longer have the thought of the "t-word" looming over our heads.  It will be done...over with.  Elise will be a "transplant patient....not a "BA patient." She will have a brand new liver rather than the cirrhotic liver that is currently trying to kill her.

Our precious little Elise is one happy, very strong little girl and will face these upcoming challenges head on....and with a big, bright smile on her face!!

Liver Clinic 5/2/12