Last night Hope & I spent the night at the sleep clinic at Children’s Hospital so that she could have her first post-HGH sleep study (what’s a sleep study?). She will be checked periodically to make sure that her adenoids and tonsils are not growing to large for her airway. Most people with Prader-Willi have some sort of respiratory issue at some point, or points in their life.
Four months ago, Hope had her first sleep study on what was the worst day I had had since we came home from the hospital. She was two months old, we had reached the deadline to wean her from the nasal-gastric tube for feeding and she still wasn’t taking hardly anything from the bottle. That morning I finally broke down and uttered the word that I had resisted for so long, “why is this happening.” Yeah, I kind of had a little breakdown. Coincidentally, Tammy had one too…at work, and that was the beginning to an early end for her school year. Later that same morning, we got the call that there had been a cancellation and we could get in for our sleep study that night–were we interested? Heck yeah! We had to have the initial study done in order to begin the growth hormone. So I went, took a few bottles, a few nipples, and a razor blade. I performed surgery on the nipples while Hope slept, solving once and for all the nipple dilemma…never had a problem with feeding after that.
Hope did not tolerate that sleep study nearly as well as this one, it was the first time I had heard her cry since the hospital. She didn’t really cry last night…she got a little frustrated, but no crocodile tears.
Something about sleep studies must trigger drama for me. Yesterday was a pretty lousy day for me to, nothing as dramatic as before — just a lot of little things that have been festering starting to come to a head. Tammy got home, we sat down for dinner, I hoped to talk a little but Grace had other plans and yet another dinner ended with somebody in tears…me on this occasion. Sometimes there’s just no room for mom. So I didn’t go to the hospital in the best of moods but Hope, bless her little heart, was just as pleasant as she could be so things were much better than I expected and that was a welcome relief.
It will take about one month for us to hear of the results of the sleep study. I didn’t bother to ask the tech for any initial impressions, last time they told me everything looked fine and two weeks later the doctor called, kind of in a panic, and we had a four-foot oxygen tank in our house within 24 hours. Hope had obstructive sleep apnea, the obstruction being her tongue, which she was unable to control due to the hypotonia. A few weeks later we were at the hospital for the CPAP test and the rest is history. I’m cautiously optimistic this time, Hope hasn’t snored in months, she’s much stonger, and as for her tongue…she just started playing with it this week — sticking in out and licking her lips. So we’ll see…
For a closer look at the sleep study click here to visit the photo album of the night’s activity.