Sunday, May 4, 2014

Sleep Study, Take 12

OK, we haven't done eleven sleep studies. But we might as well have.

In my experience so far, sleep studies are more studies in torture than in sleep. There was the one with the arm splints. The one where I stared at the CO2 monitor for 6 hours. The one with the 15 attempts to adjust an ill-fitting BiPAP mask. Lots of things happen in Collin's sleep studies. One thing that doesn't happen very much is sleep.

And I admit that I dread them. Not only are the studies themselves nerve-wracking, but the outcomes are difficult. They involve wrapping our minds around a new stress (your child doesn't breathe on his own at night) or introducing a new stressful treatment (strap this high-pressure machine to his face and see if it helps).

The amazing thing is that it's actually been three years since our last sleep study. The actual rule with the Aerodigestive team who treats Collin is that sleep studies should be repeated every two years as long as intervention (oxygen therapy, BiPAP, etc.) is being used. But I confess that when our pulmonologist left and the new one somehow believed our last study had been one year previous instead of two, we didn't enlighten her as to her mistake. Collin had FINALLY adapted to his BiPAP machine and his episodes had spaced out considerably and we had a few months of normal-ish sleep under our belts and we would be DARNED if we were going to give that up for a silly little rule. Instead, we bought another year.

So tomorrow we're heading to Cincinnati for a three-year follow-up sleep study. This will be a titration study, in which Collin will use his own mask and be hooked to a BiPAP on his own settings. Then throughout the night, the technicians will start fiddling, dropping his level of support and monitoring his reaction to their adjustments. Given its nature, we're cautiously optimistic that this study won't be as terrible as those in the past.

The ultimate goal, of course, is for Collin to be able to sleep without a BiPAP machine one day. As with so many other Collin-things, though, nothing we do really affects whether or not that will happen. The role of the BiPAP is to give him only the help he needs as long as he needs it. All we're hoping to find out from tomorrow night's study is that he doesn't need quite as much help as he used to.

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