Monday, April 2, 2012

Spring Clinic Visit

This particular visit was intended more as a follow-up to the possible pancreatic insufficiency we thought Judith may have had, but as we all know she's sufficient, so this visit turned into more of a standard visit.

Things are still looking good!  Dr. Graff said her lungs still sound clear, and he's working with the insurance company to get her approved for Synagis one last time this season.  We're still a little bit concerned about her weight gain: she's up to 19 lbs 5 oz, and still around the 3% mark on the charts.  At least she's back on the charts this visit!  The nutritionist and I are going to work on charting what she's eating to see if we can find other ways to boost the calorie content of her food.  Part of the problem is her ever increasing mobility, and now that she's walking it's only going to make things worse.  And both the nutritionist and Dr. Graff reminded me that when we adjust Judith's age, she's really not doing bad with her weight.

One of our concerns is her poop is looking really mucus-y at times.  I was just assuming that she's swallowing a lot of mucus right now, and instead of puking it out she's pooping it out (it's a wonderful visualization, I know).  Since I'm definitely concerned about her weight, and her team is a bit concerned, they're going to start testing for some other possible conditions that could be in play other than the CF.  Since we had to do her annual blood draw today, they're going to run a test for celiac disease at the same time.  We don't think she has celiac, but they want to start there to rule out the possibility.

We also talked about what we need to do with her if she is still denied the last dose of Synagis (other than the common sense things, which we've been doing all along even with the shots).  We have a list of a few different symptoms to watch out for that could indicate she picked up RSV somewhere along the line.

Hopefully the insurance will accept the team's appeal and will approve her shot, and hopefully we can go and get it by the end of the week.  In the meantime, we'll have to wait until after Easter to get results for most of the tests they're running.

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