Friday we had an epic visit to the CF clinic. I had debated whether or not to go in person, but Lemon expressed his preference that we go in person, and one of the doctors at the center gave us his opinion that it was safe to come in. So, at 11 a.m. we arrived for a long day of visits. We began with the new GI doctor. We had been transferred from the former GI doctor to this new one, who joined our hospital as a specialist in kids with liver disease arising from other complex health conditions, like CF. She took a detailed history, did a careful physical exam, ordered a bunch of labs, and adjusted Lemon's dose of ursodiol a little bit.
Next, we did the throat culture and pulmonary function testing, both of which Lemon handled with great aplomb. He was actually very excited to do the PFT's, because he remembered the little games that the setup uses to coax kids into breathing out as hard as they possibly can. He did reasonably well, his technique could still use some improvement, but he is only 7.
Then, we saw the CF doctor, who thought Lemon looked great. He, the dietitian, and I agreed that (drumroll please) Lemon was ready to decrease the amount of formula in his nightly tube feeds from 4 cartons of formula down to 3. I never would have guessed that I would be even contemplating making such a change, and with winter around the corner, no less, but Lemon is so big now and is eating so well that it seemed worth a try. We will of course keep a close eye on his weight and see how he does, we can always go back up if need be.
After that, we met with the study coordinator and another CF doctor to talk about the new study that Lemon will participate in, and sign the consents. Lemon even signed his own name to a "child attestation" sheet--he is so grown up now! We're still waiting for a call back to schedule our first imaging visit, but that will probably happen sometime next month.
Unfortunately after all that was done we did not have time to go to the lab to get blood drawn for the new set of liver labs, because we had to rush over to a different building a few miles away so Lemon could have his Fibroscan, which is an ultrasound-based measurement of liver elasticity. The new GI doc thinks it is the best tool for monitoring his liver going forward, and she was the one who actually pushed our hospital to get the machine. The results said basically the same thing as his previous ultrasound, which is that his liver is currently in good shape, so this reading will be our baseline going forward. We'll have repeated measurements annually to see how things go.
So, a huge day but we got a lot done, and didn't get home until almost 3pm. I'm glad we went in person because one thing the CF doctor told us is that the hospital is going to dramatically cut back on in-person visits, switching everything they can to telehealth throughout the winter. So, we basically got in under the wire in terms of actually seeing anyone, and probably won't see anyone in person again until 6 months from now. The research study is apparently going to proceed, though, so we may venture back off our property for that.
Meanwhile, everything else continues to more or less rumble along. This week, I thought I'd feature a guest photographer on the blog, our pandemic pod's in-person teacher extraordinaire, who also happens to be a very talented photographer--a nice change of pace from all the cellphone snapshots!
