Sleep Study

Gigi had a sleep study last night. Dr. Skotko once told us that every child with Down syndrome gets an automatic pass to a sleep study since apnea is common in individuals with Down syndrome. I just didn’t think it would happen this early, but since Gigi’s oxygen saturations dipped so low during sleep while she was hospitalized a few weeks ago, pulmonologists and ENTs recommended a sleep study sooner than later since they weren’t sure if her drop in sats was due to her illness or apnea. It will be interesting to see what the results are because I personally never thought she had an apnea issue. No, she’s not a great sleeper, especially at the beginning of the night, but I feel like that is more due to poor sleep training on our part. She’s not a snorer, nor is she a very restless sleeper. The only thing I’ve noticed is that she gasps once in a while and she positions herself on her side with her head tilted back as if to open up her airway.

So last night we headed back to Boston Children’s Hospital, happily, I might add since we weren’t sick. We arrived at 7:30, but didn’t get started until about 8:30. We had our own room with a crib and a bed.
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The nurse took about 45 minutes to place all of the leeds on Gigi. I’m glad I spoke with other moms ahead of time who suggested I bring a DVD and other things to entertain Gigi while she ‘had her hair done’.
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She did great. I just made a big deal saying she looked pretty. She loves that.

When the nurse was done getting Gigi set it was about 9:30. Gigi was tired so it wasn’t hard to get her to go to sleep.
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The sensors measure everything on Gigi from respiration rate, to oxygen levels, leg movements, brain activity, heart rhythms, and I know I missing something. The room was also videotaped the entire night.

As expected, Gigi didn’t sleep like a baby, or I guess she did if you’re talking about babies that don’t sleep great. She woke up at 10:30 and I couldn’t get her to go back to sleep until 12:30. At first she was inconsolable. I think she gets that way when she goes to bed too late and is just overtired. Then when I finally did get her to sleep getting her in the crib was the issue because she’d immediately wake up. Then when I was finally successful at that bringing the squeaky crib railing up would wake her. Finally I got into the crib with her and nursed her to sleep. Then I carefully crawled out. That must have been hilarious to whoever was monitoring the cameras. Really though, I’m sure they’ve seen it before. The next time she woke up was at 5:00 and so I guess that gave the doctors the 4 hours of data they needed. Reports won’t go to our ENT until 2-3 weeks from now. I’ll post another blog update when we find out results. I’m really hoping it’s all good!

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4 thoughts on “Sleep Study

  1. Glad it went fairly well. Sounds stressful! B hasn’t had a sleep study (he’s 2), and I can’t imagine how I would keep him from pulling out the leeds. Well done Mama – hope the results don’t take too long to get to you!

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  2. My daughter with Down syndrome is 21 months old and is the worst sleeper ever! Our doctor doesn’t think they do sleep studies this early around here, but I’ve really been pushing for one. However reading this, I believe you stated they need 4 hours of consistent sleep to get results? If so my girl would never accomplish that. She still wakes like a new born. Ugh

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    1. I’m sorry her sleep is so rough! I’d continue to push for the study and I’m surprised as well the doctor won’t test her. I’m sure there are some things they can capture during a nap and don’t need four hours. Maybe that will at least tell you something.

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