I didn't know much about sleep apnea or that Karli might have it until DH went to Dr. Sally Shott's presentation at the NDSC Conference in Kansas City in 2007. The first thing he said to me when we met back up was that he was sure Karli had sleep apnea. Dr. Shott had a list of common symptoms (I guess that would be the right word for it) and Karli fit almost every one. Snoring, hyperactivity, weird sleeping positions, and restless sleep are just some of them. We asked Karli's ENT for a sleep study and she had her first one in February of last year. The result was that she has moderate obstructive sleep apnea and mild periodic leg movement disorder.
Typically the first course of action would be to remove tonsils and adenoids. Karli had hers removed when she was 16 months old for other reasons, so this wasn't an option. I wonder how much worse her apnea would have been if we hadn't removed them when we did! So the next step for her was to try Cpap. It took 7 months to have her next sleep study done for the Cpap titration where they figure out what settings she needs for the machine. I was so excited when she wore the mask for about 10 minutes while she was still awake and then slept for about 4 hours with it on overnight. I was so optimistic that things were going to go well when we got home. We finally got the machine at the beginning of January and started right away, and we have yet to get the mask on her here at home. It just isn't going well at all and I'm so disappointed.
We go for a visit to the sleep clinic on Monday and we're going to talk about de-sensitization therapy in the hope that it will help her tolerate it. It's just so frustrating sometimes to think that we're already over a year into this and very little progress is being made. I feel so bad for Karli since poor baby doesn't know what a good night's sleep is. She's doing so well despite this but I can't help but think how much more she could be learning, etc. if we could just get her on the Cpap.
To be continued.....I just pray the next post has good news in it! :)
1 comment:
Ugh I'm so sorry it has been such a pain. After that convention, Payton had her sleep study ... moderate sleep apnea. Then the T&A. Then another study ... reduced it to mild, but we picked up the restless leg diagnosis. Ei yi yi. Now I type this from the sleep lab, where we are doing a study on Nika. Fun stuff.
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