To B A "Liver Mom": Giving Up the Wheel...

It's SO nice to be back home this evening. It was a long day at Texas Children's Hospital today, as it is every time we are there for clinic, labs, etc. Anyway, clinic went very well today! Dr. Fishman said he was really impressed with Elise's weight gain. She currently weighs 15 lb 14 oz, 25 in long. That puts her now in the 25th percentile for weight!! He still stands by his belief that she has ascites and portal hypertension. Oh, and the other problem that Dr. Fishman repeatedly refers to is her extremely high GGT level. Her GGT is currently 451. He says it actually doesn't make much difference to him whether it is 451 or 2000 because it's still entirely too high and means that her liver is not functioning properly, and she is not absorbing nutrition as she should. So, the plan is still to present her case to the Medical Review Board (MRB) with the intent to have her listed for a liver transplant. The MRB actually met today, but Elise apparently got bumped until next week's meeting due to there being two children who were more urgently in need of being reviewed and listed today.

Here's her current LIVER PANEL, for anyone interested in the details, like me:

AST (range 20-60)- 58

ALT (range 6-50)- 45

GGT (range 10-160)- 451

Albumin (range 2.8-5.0) - 3.9

Bili, direct (range <0.5)- 0.0

platelets are also normal- 370

Elise is just looking so wonderful these days. It makes me crazy to think about the "what ifs"....but of course I do anyway. I mean, I have read tons of kids' stories of transplant and the aftermath of transplant, and so often, I read about horrible, scary complications. Some have even required a second and even third transplant. Just last week, one of our little "liver friends" went through 3 liver transplants in 10 days, and she's still not out of the woods right now, although she's much improved. So when I look at Elise with near-normal labs, good weight, normal vitamin levels, no history of GI bleeds, and only "suspected" ascites and portal hypertension, it makes me think, "What if I consent to transplant and she dies or ends up in much worse shape than she is now??" I mean, it wouldn't take a whole lot to be in worse shape than she is now, because unless I'm missing something big (which I very well could be), she's looking pretty darn good. Except for the fact that... she does have a liver disease-- Biliary Atresia-- and there are cirrhotic nodules on her liver. Those are the words that haunt me.

You know, a few people have asked me recently whether I think I should get a second opinion at another center, since I seem to be so ambivalent with regard to my feelings about the plan for Elise. There's a really long answer, and a short one....here's the "in-between" version...

We love and trust Elise's liver team and transplant team at Texas Children's Hospital. We have had disagreements and have not always liked what they had to say, but ultimately, their rationales have always made sense. I've made no secret of the fact that I was very much against the NG tube when they placed it in April, but as it turns out, it has helped her to gain weight and to thrive. When I have argued with the doctors, they have argued back; her doctors have consistently made great cases to support their treatment plans, which have in turn pacified me and put me at ease....relatively speaking, of course. The bottom line is that I would take Elise to another hospital in a NANO-SECOND if I didn't believe 100% that they are doing what is truly best for Elise, all things considered, even if their plan is at times based on gut instinct.

So, all of this brings me to a resolution tonight. As hard as it is for me to give up control, I think I'm going to let God and Elise's doctors take the wheel. But I'm still in the back seat. :-)