Kate had a sleep study on Wed Jan 21, 2009 at CHOP. Even though Kate was decanned in July the study was done as a precursor to having her stoma closed surgically. We hadn't had one done prior to decann so we had no idea what to expect. The drive to CHOP is 2 hours and we needed to check in around 6:30. Most definitely it was in our favor to keep her awake on that ride and I was able to do so by feeding her gummy bears one at a time. By the time we arrived, she was positively manic on a sugar high! Anyway, we checked in extra early, only because we got there early, but we were glad we did. We had a choice of rooms. Kate layed around in the crib from 6p until about 6:30. If we'd turned off the lights, she'd have gone to bed, but she got her second wind and was roaming the halls when the tech came to set her up. The set up consists of placing various probes and wires on her head, face, chest, neck, and legs. She was FANTASTIC during the set up. She helped choose the color wire and was completely fine with all the probes, the glue they use to keep them on, the compressed air they sprayed on her to dry the glue quickly -- even the mesh headband they put on her head to keep the wires in place and the gauze around her head (for the same reason) were ok by her. But once they put the nasal prongs in she lost it completely. Adding insult to injury, they had to cover her open stoma completely with Tegaderm (a clear type of tape used mainly to secure IV sites). Hysterical doesn't even begin to cover it. Neither Brad or myself have seen her that upset since probably her palate repair 13 months ago. And because she was so pissed, she was struggling in some ways to breathe. In retrospect, she was probably just re learning what it's like to not have an extra hole in which to take in air, but it sure looked like a moderate form of distress to us. She never changed color though and the techs told us she was satting in the high 90s even while upset. I was able to rock her to sleep and then place her in the crib. She woke up hysterical 3 more times but I got her back to sleep easily. She slept pretty peacefully from 12 to 6, with no major snoring or weird breathing.
So all in all it was an ok experience. Definitely keeping her awake during the day helped. In fact the lab told us we should, not because it produced better results per se, just that she would be tired enough to eventually sleep. I knew there would be a lot of probes, but I didn't really try and relate it for her and I wished I had. Hopefully she won't need to do it again.
Now we play the waiting game. It's been 8 days and I haven't heard anything. I think Monday I'll make some calls. No WAY I can wait until Feb 12. That's our next scheduled appointment in airway clinic. We're supposed to discuss the results and either plan a stoma closure, or not.