Thursday, October 8, 2009

Here we go again

So. We were in for clinic today and we were feeling good about life. We hadn't seen hardly any blood over the last week or so (the occasional speck, but we can live with that). Blaise has been eating a lot more, sometimes giving me a "that's it?" look at the end of a bottle. Everyone should be happy.

First, the weigh-in and other measurements. She's at 13 lbs. 10 oz. and 25.5 inches. Her weight is up, but it's not as up as we'd like it to be. She's fallen off that 3rd percentile growth curve she was clinging to. In reality, no one follows a perfect curve and starts-and-stops are to be expected, but no one wants to see this continue. Ideally, she'd be gaining faster and we could start to reduce the overnight tube feeds, but for now we're just going to try to get her to eat more by mouth.

Hey! I have a great idea! Since the blood is lessened, let's give her some new foods, which would add some calories. That's what the nutritionist had in mind. That's what the GI had in mind. That's what we had in mind. Then she pooped blood during clinic. Well, crap.

Now new food is still on hold, at least until next week. We're stopping the steroid enemas because, honestly, they didn't seem to be doing much. We're sticking with the oral anti-inflammatory medicine and adding Flagyl, an antibiotic. Blaise hasn't tested positive for any bad gut bacteria, but we sent another culture for c-diff today. I guess even when they can't identifiy a specific bug, sometimes antibiotics help. At least she had the bloody stool during clinic and not 3 hours later when we had been told that all was great and full speed ahead. I was also starting to get paranoid that her GI thought we were crazy because he had never actually seen blood in her diaper. So now he knows we're not crazy. At least, not crazy in a making up medical symptoms kind of way.

It's hard to not feel a little defeated because no one knows for sure what's causing this or how to treat it. It will lessen and then worsen for no apparent reason. Adding the new antibiotic to Blaise's med schedule puts her at 14 oral/tube doses of meds or supplements daily. We need a spreadsheet to keep track of them all. If the Flagyl doesn't help and all the cultures remain negative, they'll want to do another colonoscopy. I know it could be worse. It could be a lot worse, but I still don't have to like it.

As usual, if you didn't read this blog, you would never know to look at Blaise that anything is up. She's active, cheerful, eating, sleeping and babbling up a storm. Her phoneme inventory exploded last week, going from just b, d, w to include m, n, g, l and several new vowels in the space of about three days. She enthusiastically joins conversations as well. She's just a happy, generally healthy baby who happens to have blood in her diapers.

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