Monday, July 20, 2015

Quarterly Clinic Visit

Judith's big visit was last Tuesday, and it's the one where we do all of our annual labs: blood draws, chest x-ray, etc., along with the typical quarterly stuff like cultures. I was pleased at how well she handled the visit, particularly since she had a busy day at school in the morning! A quick nap in the car while we were traveling to clinic probably helped her mood, as did a good lunch at the "local" deli chain that we love.

I was glad to see that Judith finally gained some weight; she gained about a pound and a half, which is good because she didn't gain between January and the end of April. She's still nowhere close to where they want her to be since her BMI is around 19%, but it's a start. Part of the reason that this makes me nervous, despite her gains this quarter, is that when she gets sick again, she's not going to have a lot of reserves to fall back on. There are other factors at play besides the CF that I'm sure aren't helping the situation: her ADHD, and her inheriting John's freakishly high metabolism (which I would love to be able to bottle, because I'd make a really, really nice profit selling it!).

She gained a few fractions of an inch in height, and is up to about 40.8". So no huge growth spurt... yet!

I'm waiting for her final culture results to come back, and they should be in by tomorrow. We're going to do a stool study again, because her patterns are really whacked out even with the miralax, so we want to make sure her pancreas is still functioning properly or see if she needs to start taking some enzymes.

We are starting her on some nebulized meds, which I am actually very pleased to start. We decided to start with pulmozyme first, partly because hypertonic saline is super irritating (which I knew for a long time), but also because she's not used to nebulizing meds on a daily basis, so this will be an adjustment. Her albuterol is taken via inhaler and spacer, and we only used our neb once for a 28 day cycle of TOBI when she was about 16 months old. Pulmozyme is done once a day, and from what I understand it's a quicker neb, so it's a perfect way to get her started on the nebulizing routine. Since pulmozyme is a mucolytic, it will help thin and break down the super thick mucus in her lungs, and help her cough it up easier. By starting this, and starting it now, we're hoping that this will help cut down on the number of exacerbations she has this coming cold and flu season, and I'm hoping that this will help clear things out enough that, combined with the albuterol to open the airways, we can avoid steroids... or at least oral steroids!

And this brings me to the next finding from our annual visit: Judith's x-ray results. Up until now, every report has indicated that things looked perfectly normal; no signs of damage or mucus buildups. While this isn't totally unexpected, and I was already figuring something was going to start appearing after the number of exacerbations this past winter, Judith is now showing signs of possible damage, and is showing an increase in mucus that's building up and blocking the airways. The mucus buildup makes sense, because she's had a bit of a cough that appears a few times a day, and has been around for at least a month. We're still trying to figure out if some of it could be allergy related. Anyway, it's a bummer that we're now seeing signs of damage, and I was hoping we could go longer without that reality setting in. At the same time, I realize we're extremely lucky that we've gone this long without any signs of damage. So now that it's here, our goal for Judith has to be tweaked a bit; instead of working to maintain no damage, we're now trying to keep it from progressing if at all possible, because the less damage she has once the corrector drugs are available, the better.

So overall, results from the visit really aren't that bad! We have some routine changes to make, once CVS gets the pulmozyme to us, and our days are going to get slightly crazier, but we'll adjust quickly.

No comments:

Post a Comment