Week 349: Remote

Is it me, or is the memory of how we used to live fading a little bit? I ventured out today to do some grocery shopping, and I felt like I could recall a time where I didn't shop as though I wasn't planning to leave the house again for a month. And a time where not everyone at the store wore a mask and stayed as far as possible from everyone else. And a time where the cashier wasn't behind a plexiglass barricade. I feel like I can remember all those things. And yet, also, it seems so distant now.

I definitely remember the kids going to school, but I think they feel about school the way I do about the grocery store. They have some vague notion that school used to be a thing that happened, but it seems distant and unimaginable now. I'm lucky that they are both perfectly happy being home all the time. They have all their toys, books, and art supplies. They have our yard, and their bikes. For them, it seems like a slightly odd summer vacation started a couple of months early. They play their little hearts out and get absolutely filthy every day, sleep hard, and get up ready to do it all again the next day. Our house has experienced some wear and tear, but perhaps on some unimaginable day in the future we will be able to have some of the damage repaired.

We've hit a couple more isolation milestones this week. Our hair trimmer arrived, so I gave Lemon and Papa Bear their first home haircuts. We made our own iced chocolate donuts, which I think provided the kids with further evidence that we may never need to leave the house again. We made a bunch of progress on setting up our new and expanded vegetable garden.

This Friday we have our first telehealth visit with the new doctor. Lemon is continuing to do well, so I think the only real question we have to address with him is what to do in lieu of azithromycin. We wanted to start it to control the inflammation in Lemon's lungs, but at this point even the doctor is willing to concede that Lemon is allergic to it and that it is not an option for us right now. If we really wanted to at some point down the road, we could try to desensitize Lemon, but that sounds like a project for another time. So, if we can't use azithromycin, we would like to know what our other options are.
 Other than that, we are enjoying the ever-improving weather, and trying to imagine what our summer will look like. Somehow, I suspect a lot like our life right now, except maybe a bit hotter. We'll see.

 

Week 348: Boston strong

Another week in this weird life. The kids continue to more or less take things in stride, and with the official announcement that schools will remain closed through the end of the academic year, I guess that's just as well. We are still trying to get the hang of the different online learning tools and apps and classrooms and Zoom and all the rest. We do have something resembling a school routine, at least in so far as that we reserve the hour between 8-9 for trying to coax the kids into doing some of the things that their teachers have set up for them, and then more or less forget about it for the rest of the day. I do periodically feel guilty about not doing everything, but I also feel like they are so young, and all of this is so strange to them. I still hold out hope that normal school will resume some day, and they can get caught up then.I suppose we'll see where the world is in September and take it from there.

Meanwhile, we're on our second go-around with our friend azithromycin. Or, I should say, we were on our second go around. Lemon did the entire "allergy test" portion of the azithromycin ramp-up with no problems. But, then, about a week after starting on the same dose (ie pretty much the same timing as last time), he got a bright red rash on his belly and legs again.So, I don't know what conclusion could possibly be drawn other than that he is reacting to the drug. Trust me, he hasn't been exposed to anything else weird in the past 10 days or so, we've barely left the property! I took a few pictures and will send them over to the doctor to see what he thinks we should do now. Let's just say Lemon's interest in a third attempt at this are approximately zero, and I can't say that I blame him. Of course, I'm not sure where that leaves us in terms of getting the inflammation in his lungs under control. Hopefully the doctor will have some other ideas.

As some of you know, I was supposed to run the Boston Marathon today. In the grand scheme of everything that is going on in the world, it's a small thing to have the race cancelled. There will be more trips to Boston some day, and more races to run. I am still disappointed to not have run it today, and more importantly, to have missed the chance to see and celebrate with all my Boston people. This week, we also made the tough decision to cancel our summer trip to the east coast. We didn't see any way that we would be comfortable putting Lemon (or the rest of us, for that matter) on a plane in July, so we're keeping our fingers crossed that 2021 will be a different kind of year for everyone.

Hope all of you are staying well, and we'll see you just as soon as we can.

Week 347: April snow

The good news is that we have all stayed healthy since the whatever-it-was that sickened Papa Bear and Lemon last week. So, after a few further days of isolation to be sure that we were all on the up-and-up, we have resumed our "usual" life of juggling work, home school, and life in general in this new version of reality.













We finished up Lemon's azithromycin test and he never got a rash, even when we went up to the full-strength dose. So, it seems like now he is tolerating it (or, that the doctor was right and the rash was completely unrelated, although I find that hard to believe). Of course, his seasonal allergies had just started acting up right when we started the azithromycin test, so at more or less the same time we started Zyrtec, which may have helped, who knows. In any case, if we can keep him on azithromycin to control the inflammation in his lungs, it's a win.









One little advantage of being home all the time is that Lemon is actually eating a lot more. Of course, it's in the least convenient possible fashion, being 3 bites of about 17 separately served snacks/meals throughout the day. But, in addition to being a lot of mess, it's a lot of bites. In fact, his weight is up to 55lb, which is the heaviest he has ever been in his life. He's so chubby looking that I am thinking about lowering the amount of calories in the night feed so that he will get more of his calories from eating during the day. Wild. But, in these strange and troubling times, we'll take any ray of sunshine we can get.

I hope that one other positive change that may come out of all this is that doing regular CF clinic visits via telehealth will become a regular thing. They were never offered to us as an option before, but our next visit is already scheduled that way. I certainly appreciate that in person visits are important too, but even if we just did every second visit as a telehealth visit (assuming things were going well), that would be a huge improvement, both in terms of minimizing disruption to our lives and minimizing the risk of exposing Lemon to germs every time we walk into the hospital. I for one would be very happy to only be in that lobby every 6 months instead of every 3.

I think that is about all the news from our little family at the moment. I feel very fortunate that we have so little to report right now. It is hard for me to imagine what the future looks like, even what things will be like in 2 months, or in a year. But, it's a great comfort to me that whatever that future is, I will be sharing it with all of you here, one week at a time.

Week 346: Testing the tigers

This week started promisingly enough. I finally connected with Lemon's doctor by phone. Based on the results of the bronchoscopy, he thinks that what is going on with Lemon is largely inflammation in the lung. He felt that the 2 weeks of augmentin should have killed off the bacteria that were found, so our next main challenge is to get the inflammation under control. Of course, the main tool to do that at the moment is azithromycin, which we're pretty sure gave Lemon a bad rash. However, the doctor thinks that true azithromycin allergy is rare, and that the rash was a coincidence caused by something else. So, he assigned us a home allergy test, where we first gave Lemon 3 very tiny daily doses of azithromycin. Since he didn't react to that, we are now on our first of 3 days of a slightly higher but still small dose. If he doesn't react to that, we are supposed to try going back up to full strength and see what happens. We shall see.





Meanwhile, as I'm sure you can imagine, we have been as careful as we possibly can to avoid exposure to COVID-19. Lots of hand hygiene, barely leaving our property, and I've only been in a store twice since Wisconsin issued its "safer at home" order. Nonetheless, somehow, Papa Bear contracted something. He had a high fever, was generally exhausted, body aches, etc. We were very concerned and he called the state testing hotline, but as we expected he did not qualify for a test since he wasn't sick enough. So, we had him self-isolate in the bedroom and hoped that it somehow wouldn't spread to the rest of us, particularly Lemon.






Lime and I somehow managed to avoid catching it (or, at least, we didn't have any symptoms), but Lemon caught it and woke up on Saturday morning feeling wretched with a high fever. I contacted the pulmonologist on call, who told me to call the state testing hotline, the same one that Papa Bear had called a few days prior as it turned out. I figured that with a high fever and an underlying diagnosis of CF, Lemon would be a shoo-in for testing. But no, not at all. No test for him, either. I was floored. As the pulmnologist had said, knowing whether it was COVID or not would not have changed how we treated him--the advice would still have been hydration and Tylenol. But, the idea that at this stage of the epidemic, and with his pre-existing condition, that we would be denied a test is astonishing. The tiger in the Brooklyn zoo can get a test, though.

Fortunately, both Lemon and Papa Bear are now feeling much better. They are fever-free and back to normal operating parameters. This morning I basically picked the house up by its corners and dipped it in a vat of Lysol in an attempt to kill off any remaining viruses or whatever might be lurking on any of the various surfaces. So, at this point, we will never know what it was. I guess the main take-away here is that this is exactly what "community spread" means. You can do everything in your power to protect yourself, and yet somehow, something will creep in past your defenses. Be careful out there, everybody!