Thursday, August 9, 2012

Ups and Downs

Our lucky streak with BiPap seems to have come to an end. For several nights in a row, Collin has had multiple spells throughout the night during which his blood oxygen plummets enough to set off his pulse ox alarm. Basically, the BiPap is not forcing him to breathe regularly enough to keep his oxygen levels stable. This only happens in the deepest of sleep and it seems to be the sound of the alarm or a touch from one of us that gets him breathing again.

Not only do we want better than this for Collin, but we need a more sustainable solution for ourselves. Being jolted from your sleep sometimes dozens of times a night by an alarm that indicates that your child isn't breathing is not good for the health - mental or physical. So, we've decided to set up a consultation with Collin's pulmonologist (who orders his sleep studies, oxygen, bipap, etc.) to discuss options. We would prefer to avoid another sleep study, since Collin rarely sleeps well during them and it is only in the deepest of sleep that we run into issues. Also, as my engineer husband points out, a sleep study is only one data point and doesn't yield any statistical significance that is helpful for the long term. So, we plan on asking for a safe range of BiPap settings we can experiment with at home, a big request considering they don't even allow parents access to setting-changing menus in the home. We'll see how that goes.

In brighter news, Collin is now riding 25 minutes with no break at hippotherapy! He has also started taking trips around the arena without his support pillow. The first two times, he barely made it around once, but this week he made it three times! All of this is paying off with stronger trunk muscles and much better use of his arms in propping himself up. This picture is of Collin and his current riding buddy, Tucker. Captain is on vacation for a while and Tucker is a great fit for Collin while he's away.

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