Monday, January 28, 2019

Week 284: Sinking of the Sea Cow

Well, you know what they say. If it isn't a stomach bug, it's a polar vortex. At least, that's what they say here on the frozen plains of Wisconsin.

The stomach bug dragged on for longer than we would have liked. Even after Lemon's stomach seemed to be on solid ground during the day, and he was feeling fine, he could not tolerate formula at night for several nights. Of course, each night we figured the previous night was just the last dregs of the stomach bug, and were feeling like we had to try for the full feed since he was getting so thin. Anyhow, poor guy and ick. Much ick. But we are now well and truly through it. Of course, Lemon lost all of the weight he gained after recovering from the respiratory thing earlier this month. So now we're back to where we were after Christmas, which is to say 7lb behind where we were at the end of August. This is slightly frustrating. And, with only two weeks to go until our next clinic visit, I think we will count ourselves as lucky if we are just at the same place as we were in December. Feh.

All anyone can talk about this week around here is the weather, so for those of you who don't live around here, let me fill you in. It snowed. Quite a bit. Much to the delight of Lemon and Lime, the city basically connected a plow to every single vehicle in its fleet regardless of intended use and unleashed all of them on the roads. Much to the "delight" of the entire family, there was no school. Tomorrow, school is already cancelled due to extreme cold temperatures arriving courtesy of the polar vortex. By the transitive property of school cancellations, I predict that there will also be no school on either Wednesday or Thursday, as those two days are predicted to be even colder and more vortex-y than tomorrow.

I do chuckle every time I see a news story about "Oh, it hasn't been this bad since the polar vortex of '14." Which, you may recall, struck literally the first full day that we resided in this glorious state. So it's not like we didn't know what we were getting.

I suppose one advantage of not leaving the house again until Friday is that Lemon will be forced to hang around lots of delicious things while not running off all his energy, so he might gain some weight. A disadvantage is that the entire interior of our house may be destroyed, and we may lose our minds. A small price to pay for improved health, right?

As evidence that the weather may already be having an impact on our mental health, Papa Bear has resorted to passing the time by making up Wisconsin origin stories. In particular, we have devoted much dinner-time conversation to the way in which cows came to Wisconsin. You see, milk used to be produced mainly in New York state, and transported by the brave tanker ship Sea Cow across the great lakes to the children of Wisconsin. Tragically, the Sea Cow sank in Lake Michigan under suspicious circumstances, at which point it was decided that it would be better to relocate the cows themselves to Wisconsin, rather than transporting milk in a tanker ship. Thus, all of the cows from New York were transported to Wisconsin, and here we are.

Please send help.

Monday, January 21, 2019

Week 283: Ginger ale and laundry

This has been a really gross week. And I say that in the context of having lived in the same house as two very young children for over 5 years. On Thursday evening at dinner, Lime said his stomach hurt. But, this is something he says (without much meaning as far as we can tell) at least a few times a week, so we didn't pay much attention. Well. Let's just say that later that evening, he won the award for biggest puke in our house ever, and that is with some pretty stiff competition. Without dwelling on the subject, let's just say it wasn't a one-time affair, and that we managed to exhaust both our supply of fitted sheets and of footed pajamas. Mercifully the storm was intense, but brief. After staying home from school on Friday and taking a 4-hour nap, he was more or less restored to good working order.

All seemed to be well after that. Saturday we did the usual things and had a good time all around. Things remained peaceful until about 4 a.m. Sunday, at which point Lemon took over on the laundry-creation front. Sunday was another miserable and gross affair, in which we huddled near non-porous surfaces in our house and utilized an extraordinary number of paper towels. Sunday was the first day in I can't think of how long where we did not even attempt the vest, as there was no way Lemon could have handled it. In the late afternoon, he was feeling well enough that we did do Pulmozyme, just do do at least something to keep the respiratory angle under control. Not wanting Lemon to suffer alone, Lime managed to come up with a brief relapse, possibly brought on by consuming a donut and two pickles in quick succession (his idea, not mine).

Sunday evening, Papa Bear was also not feeling great, although the adult version of this thing seems to confine itself to general malaise and stomach ache without some of the more obvious liquid manifestations. I've had various stomach twinges myself over the last 48 hours, but honestly at this point there is so much psychosomatic stuff going on (not to mention not wanting to touch anything inside my house ever again) that I'm not sure if I have the adult form or if I just think that I might.

It does sort of go without saying that this kind of event would occur 3 weeks out from our clinic visit to check for weight gain. I haven't dared to ask Lemon to get back on the scale yet, and I'm hopeful that if we only lost maybe 2 days worth of calories, the ramifications aren't that bad. Although we certainly didn't make any steps forward, hopefully we at least didn't take too many backward.

Monday, January 14, 2019

Week 282: Fruit Bats

How do you figure out the date? I was trying to figure out which day in January it was yesterday, and my thought process yesterday went, "Well, we're finishing 14 days of Cayston tomorrow, and we started on New Year's Day, so that means today must be the 13th." And, yes, I realize I could have looked at my watch or my phone, but that takes all the sport out of it. Plus, some key date-determining mental pathways in my brain were established in the pre-cellphone era, so my first instinct is always still to work it out rather than to look at some electronic thingie that will tell me. Anyhow, just the small and random ways in which CF works itself into every aspect of your life.

I had to go to the school at mid-day this week to administer Cayston at the end of recess. When I showed up on Tuesday, the nurse's assistant recognized me and said "Oh, you're the really efficient mom! I haven't seen you yet this year." I was flattered  that she  remembered me, and somewhat disheartened to think that she felt that the fact that she had not seen me until the SECOND day of school after winter break constituted a major absence. I do try to be efficient when I have to do meds during the school day, so I guess I'm glad that's what she remembers me for.

In any case, yes, we finished our 14 days of Cayston today. We debated the idea of stopping at 10 days, but Lemon still had a trace of a cough, and we wanted to be as sure as possible that we'd beaten this thing back, so we did the 4 additional days. We'll see how things go over the coming week but I'm pretty confident that we're good. Weight-wise, we've clawed our way back up to the weight that got us in trouble at our most recent clinic visit. We have about 4 weeks until our next clinic visit, so hopefully we can put on a bit more by then. We're doing our best. Especially since at a recent play date, Lemon and his buddy displayed such enthusiasm for the fruit I put out as a snack that the buddy's mom referred to them as "fruit bats." Let's just say that his tastes continue to run towards lighter fare. Even lighter, if possible. He's transitioned from snap peas to watermelon. I guess strictly speaking he did eat a bite of frosting at the birthday party we went to yesterday, in addition to the strawberries.

Tomorrow I am taking Lime to participate in a study of child development at the university. Probably the last thing I need in my life is extra appointments, but I feel like I want to contribute to whatever research I can. I feel so indebted to the parents of kids with CF who came before me and paved the way for all the treatments that Lemon has access to. I feel like one of the best things I can do is pay it forward in whatever way I can, for whatever disease or indication I can, to make things better for anyone who comes after us. So, this study has nothing whatsoever to do with CF, but with autism, an issue that doesn't affect our family but does affect so many people that we know. Hopefully Lime's participation will help the cause in some small way.

Monday, January 7, 2019

Week 281: Back to basics

Everyone has their own way of celebrating the New Year. In our house, we ring it in with the Azores in the UTC+1 time zone (ie 7pm central time) with a pre-filmed count-down on Netflix. This year, as an added bonus, we decided to start Cayston on New Year's Day. Whatever virus everyone had during Grandma and Grandpa's visit had left Lemon with a really nasty cough. Although we had still managed to avoid puking with very careful titration of our overnight feeds, we still felt like this was a cough that he wasn't going to shake on his own. And, it seems that the evidence is bearing us out on that. After 6 days of Cayston (and 3x daily vest treatments), the cough is basically gone.

Unfortunately, so is literally all the weight he gained since last winter. Every ounce. He's down 7lb since September. He was very heavy at the end of the summer so he had room to lose some. But really, not this much. I think we must now be below the 30th percentile for BMI, a place we haven't been since Lemon had his feeding tube put in. And, we only have 5 weeks until our follow-up appointment with the CF clinic for a weight check. All together, this has made us feel a strong sense of urgency to get some weight back on this kid. It was having the extra weight that kept us out of the hospital so far this winter, and we are feeling pretty nervous about what would happen if he got sick again now, with no reserves left.

Our sense of urgency has, of course, had a precise negative correlation with his willingness to eat any foods that contain calories. Apple slices, cantaloupe, snap peas, celery, carrots? All received with enthusiasm. Donuts, chips, cookies, cheese, hot dogs? Nope. The one type of high calorie food that he is excited about is McDonald's happy meals. Chicken nuggets? Yep. Cheeseburger? Yep. So, guess which vegetarian has been going to McDonald's twice a week and drinking bad cappuccinos? Yeah, well. Everyone needs a hobby.

Lemon is due to have blood drawn to recheck his liver values. I had planned to take him over the winter break so it wouldn't complicate his school schedule. But, I have a strong memory of just how high his liver values were when we drew labs during a prior illness, and I didn't want to get artificially high readings now. So, we will be doing that some other time. I did manage to pick up a tube of the topical anesthetic so we can apply it to his arm at home before we go in for the draw. Always a little adventure, though. Even though I am asked literally every time we see any healthcare provider which is our pharmacy of choice (PS it is the pharmacy INSIDE THE CHILDREN'S HOSPITAL and has been for over a year), they managed to send the prescription to the wrong pharmacy. When I sent a note asking what had happened to our prescription, the nurse wrote me back saying, "Oh, I sent it to CVS, if you want it to go somewhere else, you can call CVS and ask them to transfer it."

At least, thankfully, the kids went back to school today. Don't get me wrong, it was nice spending time as a family. But two weeks? That is rather a lot of family time. I think the kids are happy to be back with their friends, and I know the grownups are happy to have some peace and quiet to actually get work done. Definitely looking forward to finding out what 2019 has in store for us.