Friday, February 25, 2011

Quick Update, Pre-Procedure

While I was home last night a number of things occurred.

First, Bridgette vomited more... three times more, around 4AM.

Second, Jeff and Dr. Black and Dr. Harnsberger (Bridgette's new GI) agreed to do a procedure today that is somewhat new to the Hirschsprung world... Botox injections in her anal sphincter. (Why is sphincter spelled with an "i?" It seems like a "y" kind of word... sphyncter. Yes, that's better.)

Third, her procedure was scheduled for 12:15, but due to some emergency cases that have arrived at the hospital, she has been pushed back twice. Current predictions put her in the op-room around 2:30PM.

Fourth, because the procedure requires full-sedation, she is not allowed to eat or drink until she wakes up. She hasn't been whining about either, but since she hasn't had a good meal in two weeks and was dehydrated before this all began... well, she doesn't look any better today. That's for sure.

Fifth, I have decided I will not be leaving the hospital again until Bridgette comes home, no matter what.

If you're wondering why Botox injections? Well, those anti-wrinkle people came up with a drug that had HD professionals thinking. I guess with all the inherent ganglion troubles, sometimes there is a partial closure, or tightening, at the top of the anal sphincter (the sphincter having several natural internal ridges, one or more of which may be affected) that the Botox helps to relax. When the sphincter doesn't open properly at one or more ridge site, it blocks the natural flow of things and can keep bacteria trapped in the intestines which then allows for bacterial build-up.

If the injections are useful, it means we will have to do further injections every 3 to 9 months for X number of years.

Now personally, I'm not convinced Botox is the solution to our trouble, nor am I convinced this procedure will have any direct bearing on her current condition. Watery diarrhea with no obvious bacterial/viral causes may or may not have been caused by a tight sphyncter. Sorry, sphincter. When she is "well" -- which was almost all of last year once we started her on Flagyl, April to now with one enteritis scare in November which we think was viral in nature -- she is really well. She poops on her own twice daily, at predictable times of day/night. She was even recognizing her own body's urges and had started potty-training at one point, so her control seemed to me to be pretty good. Because her poop is not very thick, given the whole no-colon thing, constipation or bowel back-up hasn't seemed to be a problem... um... ever. Well, except for the first few days of her life.

Now that said, the GI told Jeff that she has had multiple TCHD kids who seem to deal with this same problem, intermittent but serious GI track problems *and* that she has had good success with the Botox solution. Although the idea is still somewhat new, almost experimental, the injections are used worldwide. I'm a part of a large Hirschsprung support group on Facebook, and the HD mums in the U.K. and Australia particularly have shared some of their experiences (although I'm starting to ask for lots of details, starting today.)

Now THAT said, just yesterday they did an anal exam (sounds pleasant, no?) sticking fingers into her anus to feel around, and there was no enteritis-like "squirt" of fecal fluid relieving a pressure build-up as we've experienced in the past. Not only that but the surgeon who performed the finger-insert (pinky first, then index finger) said that her bowel seemed quite loose and stretchy -- "soft," I think was her actual word.

I'm frustrated (continually) and on multiple fronts. I realize answers may take some time, but I'm not sure the hospital is focusing on the correct research.

So, in the meantime, I'm trying to do what I can, on the side, to figure out potential reasons for her current condition. Like... who has she been around who may have had similar symptoms... and how were they treated... and what was the natural history of the disease? And, what other bacteria/viruses is this hospital equipped to test? For example, they tested a culture for rotovirus, but can they also test for norovirus? (Yeah, when I asked yesterday, her nurse said, "For what?" She had never heard of it.)

It's just sad to me that every little thing can take Bridgette this far down the road. An illness/germ that might be really bad for one kid can be 10 or 100-fold as serious for our special tiny person. Had we not brought her to the hospital on our own, for instance, I'm quite convinced she would be dead by now. That's considerable.

While typing this I've interrupted myself to let Bridgette sit in my lap and play games on PBS Kids and to watch Tinysauruses again and to cuddle up and read "If You Take A Mouse to the Movies" and to sing her to sleep for her afternoon nap (although I must say, the family next door is LOUD. The room is full of people and they are yelling at each other and the TV is on and they are quite literally letting their children hammer on the walls.)

It's 2:40PM now and no word from surgery, so I probably won't update again until she is post-op.

Wish her luck, please.


Aria said...

Kelly, I'm thinking and praying for you family! You guys are constantly in my thoughts!

Heidi said...

My friend's niece is up at PCMC right now, too, with similar symptoms to what Bridgette is having. I wonder if it could be a similar thing? If you're interested, here is a link to their blog talking about their scenario: ... Maybe they'll find an answer that will be able to help you guys.


JulieAnn said...

I can't believe the nurse had never heard of norovirus. Seriously?

Good luck and wishes little B!

Jacqueline Miller said...

I really wish there were some better answers for you! I hope the botox helps.