Treating CF means keeping up with a lot of things. I would give us a gold star for keeping up with the things that happen on a daily basis. We do all the treatments with the vest. All the inhalers. All the nebulized stuff. All the pills. All the enzymes. Every day. I would even go so far as to say that we (well, Papa Bear specifically) are pretty good at the stuff that needs to happen every month, like the calls with the pharmacy to get refills on all the meds. We even hit the quarterly stuff pretty solidly, which is mainly our clinic visits.
But, I think if the interval gets longer than quarterly, things start to get a little raggedy. For example, changing the g-tube button. I think that's supposed to be every 3-6 months. So, I guess maybe I should do it quarterly and then I would be good at it. Instead, I usually just wait until the button is so old that it can't be connected to an extension anymore, or until Lemon pops it out while doing acrobatics, and I take that as a sign to replace it. And the nebulizer cups and masks. Those are supposed to be replaced every 6 months. I always think _this_ will be the time that I note something on some kind of electronic calendar so that it will remind me in 6 months that it's time for a fresh set. Then, inevitably, I forget to set the reminder, so I just keep going with the set we have until the masks literally crack apart from being sterilized too many times. I tell myself that this cracking always happens right around the 6-month mark, so it's a good indicator, but actually I have no idea. It could be 6 months, but could just as well be 4 or 10, I really couldn't say.
Then there's the stuff that happens even more infrequently, like annually. For example, our annual visit to the GI doctor. Of course, doctor's calendars are only open something like 6 months out, so you can't do anything convenient like schedule your one-year follow up as you're leaving your current appointment. You are told to call back in 6 months. Hah. I did eventually remember to call, but by the time I called the doctor's calendar was filled up for 3 months, so we didn't actually get in to see him until this past Friday. As I had promised Lemon, it was a total nothing appointment anyhow. The doctor asked us how things were going, I told him, he pressed on Lemon's belly a bit, and we were off again. He does want us to repeat the liver function tests in December so we can see how Lemon is doing on the new dose of ursodiol, and then we can follow up in (you guessed it) a year.
The other thing that happens maybe even less frequently than annually is replacing Lemon's vest. He's had his current one for a long time. How long? Who knows. I had been looking at it every now and again and thinking he'd gained so much height that he probably needed another one. And then that thought would leave my mind as soon as I'd left his room. But, the vest company had a rep at the CF education day that I went to last weekend, and she gave me a flier with the 800 number on it and pictures of all the different patterns of fabric that they have. So, I finally managed to sit down with Lemon, get him to pick a fabric, and placed the order, which arrived today. Lemon was thrilled, and I could tell watching him do his therapy today that the new vest really fits him much better than the old. So, I'm glad I finally got myself together to do it. Also included in the box with the vest was a new filter for the compressor that goes with the vest. Here's some new information I just learned. That filter is supposed to be changed...quarterly.
