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.