Sleep Study Take 2 and More

I suppose I'm long overdue for an update. I've mentioned bits and pieces of information here and there, facebook, email, in person - and then I realize I've probably left some of you hanging.

Last summer Chelsea had a sleep study. The results were, well, as expected. She had an abnormally high number of random limb movements which was no surprise, that's basically why we took her in - the constant movement at night, and also because she often sits up in her sleep. Unfortunately they were unable to give us definitive results because they couldn't get her to sleep on her back. They would come in and flip her, but she just kept flipping back over and if she wasn't sleeping on her back they couldn't measure her breathing and if she was having apnea episodes.

The sleep doctor suspected obstructive sleep apnea (very common in children w/ Ds) and recommended we move forward with the tonsillectomy and adenoidectomy (T&A). Being the over cautions mom that I am, I was not satisfied. I just couldn't send her into surgery if we weren't sure she was having obstructive sleep apnea. She has never had strep throat and is fairly healthy, so I wanted proof she truly needed her tonsils out.

Fast forward to December. We repeated the sleep study over Christmas break in hopes of more difinitive answers. She is now taking melatonin at night which helps her relax and fall asleep at bedtime so I was hoping it would help her enough to sleep more comfortably (and on her back) during another sleep study. We wore her out the day of the study: hemonc clinic, swimming, dinner out ... she fell asleep in less than a minute. The nurse was a little skeptical when we told her Chelsea only takes 300 micrograms (.3mg) of melatonin, but she was a believer when she saw our lil charmer crash so quickly.

While I haven't gotten a hold of the sleep study yet (but I will this weekend) the doctor reported more than 20 apnea episodes per hour. They were able to get a lot of good information in the study - she had very little REM sleep and had multiple arousals (due to apnea and random limb movements). I will be interested to see if the limb movements are directly related to the apnea episodes or if she has limb movements at times other than when she stops breathing. I digress.

We now have scheduled her T&A surgery for this Friday. In addition to removing her tonsils and adenoids, they are going to clean her ears (they're a bit waxy) and check to see if she needs new tubes, or if they need to just remove the one remaining in her left ear. We also discussed doing an ABR hearing test while she is sedated. We have had her hearing checked at the ENT clinic, but as usual, the results are a bit sketchy. They were fairly sure she can hear well but because of her delayed communication skills it was hard to know for sure if she understood what she was to do or if she was a lucky guesser. I believe she was correct a little over 50% of the time.

Of course we know she can hear pretty well - she awakes to the squeaky hallway floor in the middle of the night, but with this test hopefully they can confirm our suspicions. If she did have some hearing loss it would explain her significant delay in speech. I'm not sure if they will be able to coordinate the surgery schedule with audiology, but we're keeping our fingers crossed.

The only hesitation I have for her surgery is this cold that she's had for a week that seems to be holding on. She seemed to be doing better this weekend, even Monday, but last night I noticed her nose running. Then today she was coughing a lot during breakfast and had watery eyes, and I've heard her cough a bit tonight. Still, she's better than she was on Friday. During her pre-admission appointment last Friday they told me if she is the same, or worse on Monday I needed to call and reschedule. So technically she's not, but I'll be keeping a close eye on her over the next couple of days.

I'll update after surgery on Friday!