We saw the pulmonologist on Tuesday to get KayTar's sleep study results.
She was asleep for 86.9% of the study. (norm is greater than 90%)
She had 189 arousals or 20.9 per hour. (norm is less than 14 per hour)
Her O2 saturation was usually 97% with desats to 91%.
Her EtCO2 was as high as 52 mmHg, but usually 45-49 mmHg (norm is below 45)
She had 15 central apneas lasting between 8-16 seconds.
She had 3 obstructive hyponeas.
She had a slightly slow occipital rhythm on EEG.
So, she had some abnormalities...but nothing too dramatic, and nothing to current pulmonologist wants to treat. It is a little frustrating...on one hand, we are glad she had no major abnormalities...but on the other hand, we are tired of living in the gray area! It is also frustrating because I've talked with a few parents whose kiddos see the pulmonologist who specializes in these metabolic/mito kids (the one we were supposed to see) and she treats at lower thresholds, because these kids tend to be more affected by these subtle changes, so kids with more normal results than KayTar are being treated. I'm especially concerned about her EtCo2 being mildly, but consistently elevated all night. That, plus the fact that she holds her breath so much of the day, makes me worry a bit about hypercapnia. Seems like there is a chance that headaches and fatigue could be stemming from that and I'd like to rule it out for sure before we ignore it as a possibility. The truth is that if nobody truly knows what is going on inside KayTar's body, they really don't know if these slight changes are causing problems for her. Alas, getting a doctor to return a phone call or email these days evidently requires an act of God...so I'm not going to hold my breath that anyone will actually follow-up on this. Pun intended. ;)
In other news, KayTar has had a couple of good weeks, school-wise. She hasn't really needed to make any extra trips to the nurse during the day (with the exception of an odd earache complaint), so that is good. But she is still having issues at home...headaches a couple of nights this week and more abdominal pain tonight. I've been playing phone tag with the GI office since Friday before last...10 days now. I've spoken with a couple of nurses in the meantime, the one I mentioned in the previous post, and a different one who seemed at least familiar with KayTar's case and was reading comments that I could tell actually came from her GI. She basically asked what I felt was appropriate and I said that I just want to make sure we aren't overlooking a physical problem before writing this off as her new baseline. We decided to order a KUB and get a referral to a motility specialist. The last thing she said was, "Let me call [clinic location] to get that KUB scheduled. I'll call you right back." That as WEDNESDAY. Sooo, we're getting nowhere quick. I'm really hoping someone gets back to me this week, though, so we might have a shot of figuring this out for her.