Thursday, October 6, 2011

CF Clinic

We had yet another appointment at the CF Clinic today.  It wasn't a horrible appointment, but it wasn't great either.  I feel frustrated, and I'm concerned about where things may be headed (I could also be making a mountain out of a molehill).

The good news:
For the immediate future, it looks like we can avoid a nebulizer for breathing treatments.  Judith's lungs sounded clear, and her doctor didn't mention a need for one right now.  She grew a little more than an inch, and is over 26" long!  We got a bigger percussor to use for her CPT - it's such a minor thing, but I'm hoping I can get better coverage in the zones to get more crap out of her lungs.

The bad news:
Judith gained a half a pound since her 9 month well-baby visit, and only gained 800g since July - she weighed 15 lbs 8 oz.  The slowdown could be caused by her increased mobility, but it could also be a red flag for something bigger brewing.  So now we get to do another fun poop collection to check if her pancreas is still functioning normally or not.  If it's not, that means she'll have to start taking pancreatic enzymes every single time she eats.  We're also working frantically to build up her caloric intake to boost her weight gain again.  We're going to add some snacks to her routine, add a third solid meal, and possibly boost her Neosure from 22 calories to 24 calories.

We had to take her for a chest x-ray right after her appointment.  The last one she had was in the NICU, and her pulmonologist wants to see what's going on.  Judith's coughing has increased, and she's been spitting up mucous, so even though her lungs sounded clear he wants to rule out any problems.  Poor Judith was so tired and cranky and did not want to put up with being x-rayed.  She did well though, and the radiologist said the films turned out fine.

This is so minor in the grand scheme of things, but I asked about the requirements (so to speak) to get The Vest for her daily CPT treatments.  She needs to be at least 22 lbs to start on it, and we're nowhere near that.  While The Vest would make life a little easier (and possibly simpler, but I'm probably delusional with that), it looks like manual CPT is the plan of action for a while yet.

I wish I could get some straight answers.  We need to get the latest test results back to get a handle on things, but in the meantime I'm frustrated and worrying about the outcomes.

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