Ascites Watch

We are now seeing Gavin's GI every other week (whereas before we just saw the nurse). Its a little scary (it means Gavin's condition is getting worse) but its also nice to be able to see the actual doctor face-to-face. The last time we were able to see him was right after Gavin was diagnosed, about 5 months ago!!!

He did say that Gavin looked great for having such a high PELD score, and that he expected Gavin to look a lot worse. He said this is the best possible position he could be in...very high score, but relatively healthy (compared to other liver babies with a score of 30). It will make his recovery after transplant much easier.

However, he said Gavin is starting to have some Ascites (fluid build-up in the abdomen, a very common symptom of liver failure) and to start measuring his stomach every week. Right now it is 48cm around. If it gets to 50cm, he'll start taking some diuretics to help flush out some of the liquid. His belly button is SO distended, it sticks out completely, and the skin is all stretched out like a balloon. It is so sad and gross looking, especially when he cries, because then it REALLY bulges out. I took some pictures, although its hard to see how big his stomach really is because his diaper adds a little padding around his waist. When its off you can see how sharply it curves in.

I'm actually getting to the "when is it going to be HIS turn?" anxious feeling now....I haven't felt that at ALL up until now, I was perfectly fine with waiting. But I am seeing how uncomfortable he is, and how he is slowly having more problems...and I just want it done alrea
dy. I don't want him to be sick anymore. :( I hate having to watch him choke down his medicines 3xs a day. I hate worrying about air bubbles in his line. I hate worrying that he's going to step on his line and yank it out (he's come VERY close so many times- then they'd have to put him under again and put a new one in on the other side of his chest). I hate seeing his belly button all distended and swollen. I hate seeing his stomach bulging out and slowly filling up with fluid. I hate how bad his diaper rashes get (his medicines make him poop a lot, and they are so acidic it just strips the skin off his little bum- at least every other month his skin is raw and bleeding and it takes WEEKS to make it go away). I hate how his big, beautiful eyes are yellow instead of white.

Realistically, I know that his transplant isn't going to take all the worry away...its trading one set of problems for another, and its possible that Gavin could have a bumpy road afterwards. But just WAITING and NOT KNOWING is so hard.

{SIGH} I don't really know where all that came from...I wasn't planning on writing that, but thats what I'm feeling. This whole process just really weighs me down. Most of the time life just goes on because it has to and I have no choice but to continue going about my daily routine, but every once in awhile I just want to put it all down and admit

"I HATE THIS. I HATE LIVER DISEASE. I HATE THAT MY SON IS SICK."

So there it is.

Please continue to keep Gavin in your prayers (and his mommy and daddy, too) and keep your fingers crossed that he will get his "gift of life" soon!!!