Anyway...as far as Verity's schedule, she didn't have much going on until toward the end of the month aside from her weekly PT and OT sessions. But we did have a couple of significant things happen that last week in November, one of which isn't really worth writing too much about other than to say we had a three-hour, in-home assessment with a navigation coordinator who is helping us write up our application for Medicaid waivers, which can help Verity get more assistance in the future. Since I won't know anything for awhile on that, I will just leave that there and continue with the next and more pertinent item.
Our sleep study, which was originally scheduled for January 8, got bumped up when someone cancelled and we were able to get in on the night of November 26. This was a huge blessing we weren't expecting! It was a L-O-N-G night for both Verity and me...Verity was NOT thrilled with all the wires and gear she had on, but after an hour of screaming (!!), she finally gave up and fell asleep for a couple of minutes, sneezed, woke herself up, and screamed another 10-15 minutes before finally sleeping about an hour. We woke several times in the next couple of hours, and then she had a really rough patch from about 2-3am, finally settling down and sleeping about an hour before waking a few times before the respiratory therapist finally put us out of our misery at 5:45am and let us go home, lol.
The results of the study were sent to our ENT immediately, and we followed up with him a few days later at the earliest appointment they could give us. Not too surprisingly, we learned that Verity has a form of sleep apnea, severe obstructive apnea, although apparently not as severe as some of the kiddos we've met online! (One poor little guy had over 50 episodes an hour! Verity's average was 17.) The good news is that with just a TINY bit of oxygen, those episodes nearly disappeared altogether. So after about 24 hours of various phone calls, we got our oxygen and supplies on Friday, December 1. She only needs 1/32 of a liter per minute, and she only needs it at night, but we haven't QUITE convinced her that it is in her best interest to keep the cannula in!
Now that it's been over a week, we have a bit of a regimen...unfortunately, it still does not include the boots and bar, which seemed to be a bridge too far in getting her to sleep. So we are working on giving her some B&B time in the day until we can finish this transition with the oxygen. It works best when she is pretty sleepy if not already asleep and we can sneak the cannula under her nose and secure it onto her cheek patches.
We are making incremental progress...while we are still waking multiple times at night, it does seem to be less often, and it seems we all get deeper sleep when we are sleeping. Last night was the best yet...though it took a bit of time to settle her down, Verity slept maybe 2 hours, woke briefly, slept an hour and 20 minutes, had an absolute meltdown over the cannula from 1:50 - 2:15am, finally fell asleep again, and didn't wake up until nearly 9:00 this morning!!
I will end this update here, as the GI issues warrant a separate post...but meanwhile, we praise God for revealing the apnea to us sooner rather than later and for allowing us to get started helping Verity on the road (hopefully) to better sleep patterns.
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