Monday, February 3, 2014

Week 24: Up and down

This week was my last week off before starting my new job.  Our nanny started this week so that she and I would have a week of overlap to get Lemon accustomed to her (and vice versa).  This gave me some freedom during the daytime hours, which I took advantage of to do a little bit of outdoor running.  Once I start working, I'll basically be restricted to training at night, at least during the week (treadmill is coming), so it was good to have the chance to try out a few more variations of my neighborhood running loops.
I've found it very hard to set up Lemon's room since we've moved, because when he's awake, I'm busy hanging out with him, and when he's asleep I can't be doing much in his room.  This week, I finally managed to make a little headway in Lemon's room, getting some decorations up on the walls and putting some things away in the closet at last.
Another treat this week was a visit from Opa.  Lemon displayed his first episode of stranger anxiety when Opa first arrived, but he quickly got over it, and had a lot of fun playing with Opa and exploring some new solid foods.
















On Friday, I took Lemon over to the CF clinic to get his hard-won Synagis shot.  In Boston, these were given by the pediatrician, and the procedure was straightforward--we'd go in, they'd weigh Lemon, calculate the dose, the nurse would draw it up, inject him, and we'd leave--about 20 minutes all told.  Here in Madison, the shots are given at the hospital, and the procedure is that we go up to the clinic, go to the highly inefficient intake room where I strip Lemon down to the skin and weigh him, then gather all of his clothes back up and take him to an exam room.  The nurse calls his weight down to the hospital pharmacy, which draws up the injection and pages the nurse when it's ready.  I was told that could take as much as an hour, although luckily they must not have been too busy that day and it only took about 30 minutes.  Then, the nurse gave Lemon the injection, and then we had to sit in the exam room for 20 minutes to wait and see if he had an adverse reaction.  After that, we were free to go.  So, it was a long and boring appointment, but we found ways to pass the time.

One way was to squeeze in a bonus meeting with the nutritionist.  As you loyal readers will recall, our new insurance plan didn't cover the brand of enzymes that Lemon was on in Boston, so we had to switch to a new brand.  Papa Bear and I were both nervous that the new brand wouldn't work as well as the old one, but the insurance company said that we had to at least try the new brand, and if it didn't work, then they would consider paying for the old brand.  So, this appointment was Lemon's first weigh-in after switching to the new brand of enzymes, and we were anxious to find out how well they'd been working.






Lo and behold, they don't seem to be working nearly as well
as the old brand.  Lemon had been sticking right on his growth curve for weight since he was diagnosed, at around the 20th-25th percentile.  Since we switched enzymes, two weeks ago, he's totally fallen off that curve and is now down around the 10th percentile.  To put it differently, at this age he should be gaining about 25 grams per day, and instead, over the past two weeks he's averaged a measly 4 grams per day.

It's hard for me to convey in language that I feel comfortable posting on the internet how angry I am at the insurance company for forcing us to do this experiment on our child.  It is so critical for him to gain weight at this stage in his life, and he was on such a good path.  Now we've put ourselves in a hole that we have to dig ourselves out of, and for no reason other than to appease some nameless person or fulfill some requirement in an untitled rulebook. Hopefully now that we've demonstrated a total failure to thrive on their first-choice brand, we can switch back to the brand that works and Lemon will bounce back the way he did right after his diagnosis.  That fight will begin on Friday, when I try to push his doctor to write a letter of medical necessity to the insurance company to convince them to cover Lemon's old brand of enzymes.  As far as CF goes this isn't a big deal compared to the problems we will tackle down the road, but the fact that it was totally avoidable is what kills me.

In any case, the nutritionist helped us develop a new plan that we're trying out this week to get Lemon to start gaining weight again.  Lemon has been enjoying solid foods quite a bit, so we're increasing his solid food to three servings per day, and I'm enriching all of his solids with mashed hard-boiled egg yolk and canola oil to get as many calories into him as I can.  It's hard to go back to work when everything isn't going quite as well with him as I would like.  I'm very lucky to have the combination of a great nanny and Nona to take care of Lemon when I'm out of the house.  At least by preparing all his meals myself I know that all the right things are going into them, and with any luck we'll be back on the right enzymes before long.  Then we can put this whole stupid episode behind us and be ready to face whatever challenges come next.

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