Musings of a Marfan Mom

CPAP Update

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If you’ve been following along on Facebook, then you already know Baby J is finally sleeping with his CPAP on. It’s been quite a road, so I thought I’d lay out what we’ve done.

When we first started, we had 2 different masks: a “bubble” mask from Canada and a gel mask from the US. I don’t have a picture of the bubble mask, but it’s advantage is that it can be cut to fit a very small child. The downside is that I felt it was more difficult to place correctly on the face than the gel mask. A misplaced mask can, over time, actually alter the bone structure of the face (as can straps that are too tight). The gel mask only fits one way, but a child has to be big enough to use it. J’s head is in the 90th percentile and it started fitting him at 9 months.

I had assumed that we’d leave the pulmonologist’s office and start him on the mask that night. Instead, the recommendation was to build up his tolerance with the mask during the day time (not connected to the machine) first. Whenever J could handle having the mask on without crying, we could move on to putting him to sleep with it, then turning the machine on as soon as he was asleep (because the mask without the machine would just be an additional obstruction). We would have 3 months. If J couldn’t sleep with the mask by that time, we’d need to move forward with the exploratory surgery to look for a surgical solution to his sleep apnea.

It took exactly 7 weeks. Honestly, if I’d been consistent at having him wear it every afternoon and hadn’t had 2 trips out of town, he probably would have acclimated more quickly. At first, J would scream and rip the mask off his face. His OT suggested I swaddle him first, since he still insists on being swaddled to sleep at night. That and time is what it took.

The first night we tried putting him to sleep with the mask, Mark quickly realized there was no “letting him fall asleep and then turn the machine on.” The CPAP is way too loud for that. It took a good 40 minutes to get J to fall asleep but then an alarm started going off every 2 minutes and woke him up. Had to scrap the plan for the night and put him back on oxygen.

Next day, we got the oxygen company’s respiratory therapist to come out and help us change the machine settings. Success! And, baby only woke once during the night! The every 1.5 – 3 hours all night long has REALLY been draining Mark and me.

We’re almost a week into the CPAP. Baby J is falling asleep a little faster. His waking habits haven’t been as dramatic as that first night, but I think they’ve improved a bit.

Our next step is another sleep study. Right now J’s CPAP is on a 4, the lowest setting. His pulmonologist said that for a case as severe as his is, he’ll almost certainly need a much higher setting. The sleep study clinic will call us this week to schedule that and that study will check his CO2 levels as well as determine the proper setting. We’ll then make gradual adjustments at home until he’s where he needs to be.

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