Thursday, August 2, 2012

Another Gold Medal Event for Collin

We've been training for this for a year and a half now.

When Collin was 18 months old, we learned that he has severe central apnea (his brain stops reliably telling his body to breathe while he's asleep) that was causing his blood oxygen levels to dip far below safe levels for much of the night. He was never getting good sleep because eventually his body would sense the emergency situation and wake up.

At first, the experts didn't think bipap was even an option for Collin. They thought his low tone and Nissen fundoplication would cause too many complications. So, they put him on a low flow of oxygen, which seemed to take care of the blood oxygenation issue and some of the failure-to-breathe issue.

But once we got a pulse oximeter and looked at his oxygenation trends in his home environment, we realized that he was still having desats (drops in blood O2) well below the safe range multiple times a night. The difference was likely due to the fact that his quality of sleep was so poor at the hospital -- getting into deeper sleep at home made the disconnect between his brain and his breathing even wider.

So, we saw some different experts. Collin was older and stronger and these doctors seemed to think that bipap would be preferable to oxygen treatment in that it would actually fix the lack of breathing rather than just covering up its symptoms with extra oxygen flow. They did another sleep study (the 4th one) and prescribed appropriate settings for his bipap machine.

We tried. He couldn't tolerate it. We tried again. He still could barely stand it while awake, much less fall asleep. We found a special pediatric mask. We instituted a training schedule. He made slow but steady improvement. We started with naps and then moved to nights. He continued to desat even with the bipap pressure. We lost a lot of sleep.

And then something kicked in. It's like how some athletes train and train and are really incredible, but other athletes have that special something that always kicks in at the right time and gives them an extra edge. Collin's extra somethings are adaptability and resilience. Just when I was resigning myself to a life of poor sleep, Collin started sleeping through the night. His desats reduced to 0 - 3 a night. His oxygen saturation increased to the same levels he typically shows while on oxygen treatment. He woke up happy in the mornings. He smiles when we put on his mask and turn on the machine and falls asleep within minutes.

So, Collin goes for the gold and gets it again. Not sure why I continue to be surprised.

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