Having a Child with Down Syndrome, Part LXXVI: Sleep Studies

Copyright © 2015 Stephen Hawley, all rights reserved.

Last night, Alice had her fourth sleep study. The first three were when she was much younger, and the first two were failures. It’s not surprising. In a sleep study, you get 21 sensors hooked up to your body and then are you are expected to sleep. After the third one, they were able to get some actual data that confirmed what we had told them: Alice was not sleeping well. After that study, they removed her tonsils. No surprise. Tonsils and adenoids are often disproportionally large in people with Down syndrome and can interfere with sleep (side note, their ear canals by contrast are disproportionally smaller and prone to infection, which usually means congestion and difficulty breathing and sleeping).

Alice has not been sleeping well and E suspects apnea and requested a CPAP. The doctors, of course, wanted data first so another sleep study. I went with her and spent time beforehand going over what was going to happen. We arrived and Alice changed into pajamas and the tech put on sensors.

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Through the process, Alice was very chipper and chatty and was asking what each sensor was for. Unlike last time, she didn’t try to pry them off immediately. I think things went better because she had her expectations set better and could participate in the process.

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I honestly don’t understand how they can expect you have a normal night’s sleep with this rig on. This is a canula that measures CO2 concentration and the beak out front is a thermistor to measure when she’s exhaling – which seems silly to me because she has two belts and two other sensors that measure breathing as well. Well, anything for the discomfort of the patient.

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The only sensor that Alice objected to was the oximeter on her finger. She was fidgeting with it constantly. I read to her until she fell asleep and then shut out the lights. Unlike the last time, they had a bed of sorts for me to sleep on. Last time, it was a chair. So hooray, progress?

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Alice stirred enough to wake me up 4 times during the night and at least once, I noted that the her breathing stopped for a while. Around 3:30 she tore off all the electrodes. The tech came in to survey the damage, but 5 hours of data was enough. Alice fell back alseep and then I did a few hours later.

So now, of course, today both of us are off our respective games. Hopefully it won’t be a demanding day.

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