We took Zadie to CHOP in Philly today for a visit with her ENT, Dr. Javia. After her bronchoscopy and sleep endoscopy in March, he said there was a possibility that the tonsils need to come out, since they were pretty large. This was pretty disappointing since she was just in the OR in September to have her adenoids removed. Apparently, at that time, the tonsils were so small that he didn't feel they needed to come out. Recovery from a tonsillectomy is much worse than from just an adenoidectomy, and I do appreciate that he only does what he feels is absolutely necessary.
However, now that Dr. Javia has confirmed that he feels she needs a tonsillectomy, I do wish he had just taken them out in September. Two birds, one stone? She's scheduled for the tonsillectomy for May 6, which is just over three weeks away. After that, we'll be able to schedule her for another sleep study to see if there is any improvement to the obstructive sleep apnea. Since her airway looked beautiful in the March scope, if the tonsils don't prove to be the problem, then hypotonia of the upper airway will be the likely culprit. There is no surgical repair for hypotonia, it is just something that Zadie will have to outgrow. Since there's no other reason for the trach right now besides the OSA, Dr. Javia said that decannulating (removing the trach) and putting her on a CPAP mask is a possibility. She would have to get used to the CPAP mask before decann, though. I'm not sure how she'll do with a mask on her face!
I hate to put Zadie through another surgery! I know it's for the best and she won't remember much (the older she gets, the less we can say "she won't remember any of this!") but it's just no fun. The older she gets, the worse things like surgery and hospitalizations and blood draws get. But she's a trouper and soon enough, this will be in her rearview mirror.