Monday, June 26, 2017

Week 201: On the floor

Lots of moving parts this past week as we launched into summer. On Tuesday, we had Lemon's first session at "food school." He loved it--continues to view it way more positively than summer camp. Each session starts off with 15 minutes of "gross motor" play to get the kids into the right frame of mind to sit still and receive eating therapy. Miss Rachelle had a technical term for it, but I believe the vernacular is "getting the ya-yas out." In any case, Lemon loved all the various toys, the ball pit, the giant foam blocks, and so forth. And the strategy was successful, in that he was then willing to sit still at the table for almost 45 minutes and consider the various things that Miss Rachelle was asking him to do. He was game for most of it, and seems eager to go back again tomorrow for another session. The purpose of the first session was mainly for Miss Rachelle to make sure that she had found the approach that would be the best fit for Lemon, and she thinks she has, so tomorrow we should be getting some take-home materials so that we can work on reinforcing some of the concepts at home.

On Wednesday, we had our big clinic visit, which took approximately forever. We started off with height and weight--good news on those fronts: Lemon has gained 2lb and grown an inch in the last 3 months. Not bad for a guy who eats literally nothing! He's doing so well, in fact, that our nutritionist thought it would be OK for us to go down a bit on the tube feeds in order to get him hungrier as we get further into feeding therapy. Then, it was off to pulmonary function testing, where the goal is to exhale as forcefully as possible into the mouthpiece of a machine that measures how much air you are blowing out. This was Lemon's first time doing it, so the main idea was just to have him try it and get used to the machine. He liked watching the candles on the computer screen go out as he blew into the tube. Unfortunately, I was unable to convince him that making a loud roaring sound is not exactly the same thing as exhaling as hard as possible. Still, it's a start, and the whole point of starting now is so he can learn how to do the test correctly--as you can imagine, the actual readings that you get from the test with a kid this young are of dubious accuracy.

After the PFTs, we met with our nurse practitioner. Generally speaking, she thought Lemon was doing great. She got to take a good look at him, since we are going through a strong "clothing optional" phase of development at the moment and he spent the entirety of the visit zipping around the exam room wearing nothing but his undies. She didn't really have any answers about the right approach for the cough he has right now. It's not what I would consider his baseline (or, at least, what I used to consider his baseline), which is no cough at all. But, it's certainly not what he usually is when he is sick, which is quite a lot of cough, and coughing in his sleep, which he's not doing at all right now. We did talk about whether or not we should just adopt the "usual" schedule for Cayston, which is 28 days on, 28 days off--our nurse practitioner didn't really have any guidance on that, she said I should do what I thought was best (because I'm the clinician?). Originally, it wasn't our plan to be on a schedule, but rather just to use Cayston as our intervention when he was sick. In practice, though, that has translated into the 28 on/28 off schedule almost exactly. By that schedule, we were on in March, off in April, on in May, and off in June. So, the big question Papa Bear and I have to decide in the next couple of days is whether we are going to be "on" for July.

Of course, the timing is really lousy because we're going on vacation next week, but on the other hand nothing about CF is convenient and I do feel like it is important to intervene aggressively now so that we preserve as much lung function as we possibly can. But on the _other_ other hand if there isn't a bacterial infection going on at the moment, there wouldn't really be much point to doing a month of inhaled antibiotics. We did do a throat culture at this visit so I'm waiting on the results from that--I suppose if we see anything besides normal flora there, that would be an indicator that would push me towards biting the bullet and doing the Cayston. We shall see. I'm not even going to get into the number of phone calls it took us to get our Cayston prescription refilled this week so that we'll be ready to do the Cayston if we decide to go that route--but it was a truly ludicrous number, an order of magnitude larger than the "1" you might expect given that this was a refill.

The other thing we did at this clinic visit was have some blood drawn to repeat Lemon's liver tests. As you may remember, we had them done late this past fall, when he had a PICC in, and the results were sky-high, presumably because he was really sick at the time. We repeated them a couple of months ago, and the levels were still high, but way less high than before. On Wednesday, the levels were ever so slightly less high than that, but still outside the normal range. So, our current plan of action there is to recheck again next month, and if they're still high after that, schedule a GI consult to get some thoughts. Since Lemon has never had liver tests inside the normal range in his life, I find it hard to imagine that next month will be that magic first time where they come back normal, but we shall see.

In the mean time, we are very excited to be gearing up for our summer vacation to the coast. It will be Lime's first time seeing the ocean, and I suspect he will love it. I've started the inevitable process of making mental lists of things, so many things, that we will need to bring with us. Packing is off to a promising start though, in so far as the portable IV pole that I ordered does appear to be small enough to fit in our largest suitcase. Filing that one under "things I never thought I would have to worry about when planning a trip."

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