The sleep apnea saga continues...
Lauren is not tolerating the CPAP well at all. She seems to be able to get started and will even fall asleep with it on. But after about 30 minutes she wakes up, realizes it's on, and seems to panic and needs it off immediately. The longest we've ever gone was about an hour and a half and it happened one time. Usually we're making it about 25-40 minutes. It's frustrating, but I know it's not something we can force and she really is trying.
She saw ENT yesterday. I planned to bring up the Inspire procedure (hypoglossal nerve stimulator) and the doctor brought it up before I could. He said he thinks she'd be a great candidate. Currently there are studies happening for ages 10+ in both Boston and Cincinnati and he said he'd be happy to sign off if we want to travel to have it done. However, he's actively seeking opportunities to learn and once he does it on two adults he can do in pediatric patients. He hopes to be certified within the year. We're likely choosing to wait for him to do it, for multiple reasons. A surgeon we already know and has already operated on Lauren, being close to home for both surgery and follow up, being close to home in case of complications, etc. I think waiting will be a better choice. He did say he this likely won't completely take away her sleep apnea, but it can bring her AHI from 16 to 8. If Lauren remains unable to tolerate CPAP (I do have hope though!) we have to try and get the severity of the sleep apnea down. There's another surgery he can do (epiglottopexy), but I think we're going to wait and see how things pan out with both the CPAP and our ENT getting certified to do the Inspire procedure. He did say the Inspire surgery would leave visible scarring. The nerve stimulator device would go under the chest muscle, so an incision on her chest, plus also incremental incisions on her neck as they feed the electrode to the hypoglossal nerve. We're not super concerned about scarring (she already has scars on her chest/belly/arm from her heart surgery and PICC line placement as a baby) so this isn't really a deterrent for us, but I appreciate the heads up because I didn't know that.
In the meantime, we're going to continue to try and get Lauren to be able to use the CPAP. She's really trying and she's so sweet about it.
Her post-COVID GI issues remain a frustration. We started medication for acid reflux in October and she improved about 95%, but once she got covid things got much worse and didn't really get better. There was a day earlier this month where I got multiple messages/calls from school because Lauren was complaining of belly pain. We saw GI earlier this month. She thinks it might be post-viral delayed gastric emptying. She gave us two new medications to try (hycosamine and cyproheptadine). The hycosamine seemed to me to make the stomach pain worse, so with the blessing of the GI nurse we stopped that one after a few days. The cyproheptadine does seem to be helping and she's complained a lot less! I'm going to follow up by phone with GI next week for an update and we'll decide how to proceed with testing. I've kept detailed notes of the date, time of day pain happens, GI symptoms, and food intake. The doctor is thinking either a gastric emptying study (and scope depending on results) or scope with biopsy as the next step. We can't keep her on the cyproheptadine long term because it causes increased appetite and leads to weight gain, and we've worked so hard on keeping Lauren at a healthier weight. If she gains too much weight her sleep apnea could get worse, the stress on her heart could be worse, etc. So it's a delicate balance of doing what works while keeping all parts of her as healthy as possible.
We follow up with immunology next month and will get updated blood work to look at Lauren's immune system function. She got covid between vaccine doses, which was obviously unfortunate. The plan was to check her covid antibodies about 4-6 weeks after vaccination to see how well her body responded to the vaccine. I'm not sure if that timeline changes at all since she also had covid, but I know we're due for blood work anyway.
I need to make an appointment with sleep medicine to follow up, but it seems kind of unnecessary at this point in time since she isn't really tolerating the CPAP. I feel like it will be time out of school to drive 30 minutes to the hospital for them to tell us she needs to wear the CPAP more. We know this already. I'm not in a rush to do that, but I will say the doctor and the medical staff at that office are so incredibly kind!
On a fun note, Lauren started ballet at the rec center and she really loves it! I was unsure how she'd do in a class with typical peers (I did put her down an age group so she's with 5-7 year olds). She enjoys it so much and loves to show me what they learned in class.
