Saturday, July 28, 2012

Time flies...or something like that

Wanted to give small update. There's not much to tell, which is astounding. Almost all tests have come back and they are all negative. On Friday, which was the last day for the doc who's been on our case since Sunday, I could tell how frustrated he was. Which is nothing along the lines of how frustrated I was!
We knew this could happen, but what I didn't want was for anyone to give up. Though I suppose it's kind of hard not to when you aren't on the rotation anymore. Dr Kooros's plan was to treat bacterial overgrowth AGAIN very aggressively for a month, do a strict lactose free diet, then probiotics.
So a couple things happened after this was thrown out there as a possibility. First, I started thinking, which is always scary. In a hospital, it also usually means you get pissed off. Well, for me anyway. But they were giving him Flagyl for overgrowth, which is the world's most disgusting medicine. He has to have it 3 times a day for a month. After the second dose, he was crying. And I basically said there's no way this is going to work. I asked for alternatives, possibly IV at least while he has PICC line, but pretty much everyone had gone home, so I got some mean chick who came in and rudely told me they weren't going to give him the antibiotics IV. He had to take them orally because he's going to go home and he'll need them orally. The way she said all this...well, I was pretty close to bitch slapping. I'm not terribly mature anyway and the more time spent in a hospital, the less tolerance you have and the way less you care what others think. I think it has something to do with meeting doctors all day in your pjs. It's just weird. At least I have my diamonds.

Anyway, long story a little less long, I told her that was not a good enough reason and she could go back and ask for a real reason before I'd accept it. But I had no hope of that, and in fact, I never saw her again. In the meantime I emailed Dr Borowitz's nurse after hours asking if they had ideas. She actually emailed me back almost immediately that they had a mom once take the pill instead of the liquid, cut it into chunks, and mix it with jam. Slid right down. So I tried it with banana chunks, and while he says it's stinky banana, he does just fine with it and it's about as painless as it gets! He may end up with a distaste for banana someday, but then we'd be on the same page, so that's okay by me.

Today brought the return of the original GI doc we saw here. Until he came in, I was ready to play along with everyone here, let him gain weight, and then just move on to the next place. But he stepped up. He set a plan in place immediately to get renal, genetics, endocrine, and metabolic specialists involved since GI has pretty much been exhausted, within an hour we had already had a kidney ultrasound and more urine testing done, all of which was normal but needed to be done as a baseline. We probably won't see those specialists til Monday, and they will decide what other blood tests can be done, which is no big deal because they draw the blood from the PICC. Also, Dr Semrin has no problems with us going home using the TPN if necessary, just so we can get ahead of the game. But we will stay and get this further testing done while here cause it just makes sense. Also, it takes a little time to concentrate the TPN to just overnight for us to go home, if that's what needs to be done.
Then if ALL this shows nothing, he will gather results and start sending them out to other doctors around the country, which is the other thing I REALLY wanted to hear. So I'm encouraged that not everyone has given up and there is a doctor showing marked interest in the case. For now, we'll stick with him, unless he pisses us off too. ;)

Here are a few pics of the walloping good time we are having:

Cousin visits bring out the best in everyone!

Wild and goofy.

Um...wild and goofy.

I just want this so badly. Right next to me, right now.

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