Week 332: Seeing Red

Ah, another Christmas complete. Generally speaking, we had a lovely time. Grandma and Grandpa were in town from New York, many fabulous gifts were exchanged, too much delicious food was consumed, movies were watched, quality time with family was enjoyed by all. And yet, as always, there were a few little wrinkles.

First of all, we decided to start Cayston on Christmas Eve. I mean, what holiday season is complete without a course of strong antibiotics? It was definitely the right decision, though. Lemon was pretty sick, had been sick for a week with no real sign of improvement, and the cough began to improve pretty much immediately after we started. Fingers crossed we will be able to get away with a 10-day course this time, and have him back at "winter baseline" in time for when school resumes next week. Of course, we have lost yet more ground on nutrition that we now need to make up. Luckily he is well enough now to tolerate the regular volume of tube feeding overnight, so at least there's hope that we may at some point get back to where we once were.

In other minor health crises, Grandpa managed to cut himself pretty badly with a kitchen knife and went to the ER to seek medical attention (verdict: tetanus booster and prophylactic course of oral antibiotics). Grandma caught a virus from somewhere or another and unfortunately wasn't feeling that great for the latter half of their visit. At least the conjunctivitis didn't set in until they were safely back in New York (no, I am not making this up).





Then there was the slime. The boys got a set of new, weird Play-Doh like things as a gift. One of them was called Super Cloud, which is basically somewhere between slime and silly putty. At some point, Lime decided to smear a handful of it on Lemon's shirt. The babysitter, who was with them at the time, took the not entirely unreasonable step of taking off the shirt and tossing it directly into the washing machine, unbeknownst to me. Then, the next day, I decided to embark on one of my favorite thankless tasks, washing all the covers from the cushions on our couch, which get kind of grimy due to the number of forts that are built around here. So, I threw a load of cushion covers into the machine, ran it, and was thrilled to discover that they all came out covered in blotches of red slime; blotches that were impervious to isopropanol, acetone, dish soap, and, well, everything.  Fabulous. A call to the company resulted in such helpful comments as "It got on the couch? Really? I will have to have a specialist call you back." Because who would have thought that a gloppy product marketed to preschoolers could ever come into contact with a sofa?

In any event, upon noting that the product did seem to soften up in hotter water, I took a risk and ran the cushions covers through the washing machine again with warmer water, and that appeared to get rid of the splotches. Or, it spread the red slime in such a thin, even layer on our red cushion covers that it was not noticeable. Either way, our couch is cleaner, reassembled, and not permanently disfigured. And the Play-Doh company is sending an age-appropriate game as compensation for our troubles. They asked if I wanted a replacement Play-Doh product, to which I replied with a very emphatic "NO!"

So, that was our holidays in a nutshell. And, onward to 2020, where my greatest wish is for the pediatric approval for Trikafta to come through. Fingers crossed, everyone!

Week 331: Ho Ho Home

And just like that, the holiday week is upon us. Naturally, it would not be a holiday week without some manner of illness cropping up. Lime has had some kind of fairly assertive cough for, oh, I don't know, a week? It is hard to keep track of these things. Anyhow, we kind of thought perhaps it had skipped Lemon this time around, but no, it had not. He's had a pretty solid cough since Tuesday, and had to miss his class's winter show on Wednesday since he just was not well enough to go to school. Generally speaking, he is pretty feisty and does not like to miss things, so when he was lying inert in bed and could not be persuaded to go to school, even later in the day after I let him stay home for the morning, I knew things were serious.

He's been gradually recovering, although the cough has been pretty severe. For the first time in a long time, I had to actually stop the vest and nebulizer mid-treatment and let him take a break for a few minutes, because he was coughing so hard he couldn't tolerate it. I think/hope he is gradually starting to get better, even though he still doesn't really sound great. We'll give him another couple of days before deciding about Cayston. Because, of course, I'm thinking, "well, if we do have to do Cayston, Christmas vacation is an ideal time since he doesn't have school for two weeks." Because this is the calculus we do in CF households. And also why we don't travel in the winter.  We seem to pick up enough things without spending time in pressurized contagion tubes (aka airplanes).






As usual, Grandma and Grandpa braved the odds of modern air travel and made their way here from New York. We've been enjoying a quiet visit with them so far, taking in a few Star Wars movies, reading, playing with toys, etc. Meanwhile, Papa Bear and I have been gradually converting our office into an Amazon Prime distribution center, or at least that is what you would think given its current appearance. Our boys are very lucky to have so many exceptionally generous people in their lives. Thanks to a certain grinch in their family tree (ahem), they are at least aware that the gifts come from the people in their lives, and not some bearded fellow with a sleigh.

I hope all of you are enjoying whatever holiday you are celebrating, in whatever manner you are celebrating it. And, I hope you are steering clear of sources of contagion and practicing good hand hygiene! Because, really, nothing says holidays like the abundant use of hand sanitizer.

Week 330: Check it up

Another week, another unusual first--Lemon's first CT scan. We spent many happy hours at the hospital on Wednesday for our quarterly check-up. As usual, there were many people to see. First, the respiratory therapist who did the pulmonary function test. Then the social worker. And the nurse-practitioner. And the dietitian. And the other respiratory therapist. And the nurse who does the throat culture. And (surprise!) the phlebotomist, because unbeknownst to us we were doing liver labs. And the research coordinator. And the guy who ran the CT machine. So, it was a big day. But, here are the upshots.

I talked to the nurse-practitioner about Lemon's cough. I have felt like this fall we have spent precious little time at what I would consider "winter baseline." Most of the time, we've been hovering somewhere above it. And yet, we've only done Cayston once. So, I was starting to wonder if we were under-treating things. But, the nurse-practitioner told me that it's been a rotten fall for a lot of families, and that they have a lot of kids in the hospital right now as a result. And, she thinks we're doing fine. Despite all of the illnesses and associated reductions in tube feeds, Lemon has actually more or less held his ground weight-wise since September. Of course, he grew some so his BMI went down, but not by much. So, our instructions from a respiratory perspective are to keep on keeping on, so to speak. From a nutrition perspective, we are to add yet more DuoCal to our tube feeds, to see if we can actually gain some ground rather than just treading water. So, we've started that and will see where it takes us. 

Lemon was surprisingly calm about the surprise lab draw, and I'm glad to report that the results we got back were great, all of Lemon's liver function tests were more or less normal. We have a follow-up scheduled with GI for next month, so we'll see what the doctor wants us to do now. Lemon's throat culture also came back with no surprises, phew. 

The CT scan was actually really fun for Lemon. He liked that we got to go on an extended walk through the bowels of the hospital to get to the room where the machine was, and he was amazingly cooperative about holding his breath and staying still. I think he got a big kick out of talking to the technician through the intercom while the scans were running. And, luckily, the whole thing only took about 5 minutes. Unfortunately, the CF team doesn't get to see the results of the scan, since it is a research scan and not a diagnostic scan. The research radiologist will tell them if there are any unusual findings, and if there were, then we would have to get a diagnostic scan to follow up. So, that seems like kind of a waste to me (I mean after all, presumably the research scan is good enough to actually see/tell something, right?). But, anyhow, I suppose if all we learn is that the findings are not unusual, we do have one more tiny bit of information than we did previously.

Other than all that, we are now in the full headlong rush to winter break, where we alternately have fun and wonder what we will do with the kids with two full weeks off from school. I'm sure we'll come up with something, the only question is what...

Week 329: Finals

I know, I'm getting a bit old for this, but I have a final project for a class due tomorrow. So, I will keep things brief for this week. Overall, it has been a good one. I think I managed to teach Lemon's class something about genes. Honestly, even if they only remember the first point of my little presentation, which is that "jeans" and "genes" are two different things and that "genes" are your body's instructions that are made out of DNA, I will consider it a success. And, I had a fun time reading Lime's class a book about large numbers. So, all in all, a good week for spreading the nerd vibe among young people of impressionable ages.

We are gearing up for Lemon's clinic visit on Wednesday morning, which will include a chest CT as part of the clinical study that he has been a part of since he was born. It is in fact his last visit as part of that study, which is kind of an amazing milestone. I am looking forward to figuring out what other things we can participate in to contribute to CF research going forward. In the mean time, here are some pictures from the week,and back to my final project for me!

Week 328: Week of the week

Happy Thanksgiving, folks. Hope you had a good one. I am glad to report that we had a very nice one here in Wisconsin, just the four of us plus Nona and Opa. We were happy to just hang around and enjoy a few days off together, livened up with trips to see Frozen II and the aquarium in Milwaukee.

We also took advantage of the long weekend to get the boys ready for being "Explorer of the Week" (Lemon) and "Child of the Week" (Lime) at their respective schools. What possessed me to sign them both up for these honors on the same week escapes me right now. In any event, we printed photos, decorated posters, gathered objects to show the classes, etc. I also am going to Lemon's class on Wednesday to give a presentation on genetics. I will steer clear of CF genetics, of course, and focus on more benign and funny traits like tongue rolling. Still, I suppose it's good to plant the seeds of understanding now, so that when Lemon and his peers are ready to learn more about CF, they'll have the basics down.

Papa Bear and I also watched a new documentary ("Love, Antosha) about Anton Yelchin, an actor who was killed in a tragic accident in 2016. What many people did not know about him was that he had CF. It's not a major focus of the movie, mainly because he kept it so private, but it is still amazing to look at the body of work he produced and know what he must have had going on in the background to sustain it all. One sort of amazing fact that I gleaned from the movie was that Anton's parents somehow managed to keep it a secret from him that he had CF until quite late in his childhood. I really don't understand how they managed that, given the need for so many doctor's appointments and therapies. I also have to wonder (it wasn't discussed at all in the movie) how Anton felt about finding out so many years on that his parents had kept such a secret from him. He was very close with both is parents, and there was nothing in the latter portion of the movie to suggest that the revelation of that secret had had a negative impact on the relationship, but I find that difficult to imagine.







Health-wise things are OK, I think. Lemon still has a little bit of a residual cough, but seems to have plenty of energy and is tolerating his full tube feeds (knock on wood!!!) so we may be OK for now. We actually have our next clinic visit coming up a week from Wednesday, so we can see if they have any new winter insights for us. In the meanwhile, we will just try to stay vigilant and hopefully but a bit of the lost weight back on so that we have some kind of buffer going into the heart of winter.