Tuesday, February 18, 2014

Sleep Apnea

Remember this? The sleep study that we did way back in October? The one where I didn't think we'd get much information, except perhaps that Finleigh isn't getting enough REM sleep?

Well, we got our results and it turns out that indeed, we did find out something.

Finleigh has sleep apnea. It's not super severe that they were in a rush to do anything about it, but it's bad enough that she's waking up 60+ times per night. And that she's spending a good portion of her night with her oxygen saturation at around 86% - which isn't great.

Oh ya, and she's not getting enough REM sleep.

I have a whole report with a bunch of technical terms that I could share here, but I won't. The sleep specialist has a plan for how treatment is going to go down. Starting with medication to help open up her airways - I've seen no appreciable difference since she started taking it a week ago. Then we'll be seeing the ENT in April to talk about a tonsillectomy. Her adenoids are normal sized, apparently, so taking those out likely won't be necessary. Then? If those don't work, a CPAP machine…. which I can imagine will work really great on an SMSer.

The idea, frankly, is laughable. But we'll try it.

I wonder if the apnea is related to the tracheomalacia she was diagnosed with as an infant. I must remember to talk to the ENT about that when we see him. And the sleep specialist too.

I had a number of feelings wash over me as the results sunk in. First was relief that there might be something we can do to improve her sleep besides heavy duty meds (which still don't necessarily offer good quality sleep). The sleep specialist sounded so positive that she could help. And that improving her sleep would really go a long way to helping her development and daily life. It had me feeling happy about this result.

But then I began to feel angry. Really, really angry that it took seven years to figure this out. We've been trying to get a doctor to recognize Finleigh's sleep issues forever. Melatonin has only ever assisted ever so slightly in helping her fall asleep. We still have the awakenings in the night. Over and over again, I tried to get the ENT to help us… when we could get in. Which was rare given the 9 month wait times. I was angry with the doctors for not listening to us. I was angry with myself for not making myself heard. Who knows where she could be right now had she been getting proper sleep all these years?

I thought her flipped melatonin production was bad. When we found out that Finleigh has SMS and that her body didn't make melatonin at night, I felt like I hadn't been crazy all these years. There really was something wrong with her sleep. I wasn't imagining it. It hadn't been that we'd been too soft on her or messed her up in some way. There was a physiological reason for her sleep issues. It was something I hadn't seen coming.

But I've been saying for years that I thought Finleigh had sleep apnea. And that her snoring wasn't normal. And that we needed more help.

I guess I didn't say it loud enough.

So now? Now, how do I feel? If I'm honest, I don't feel anything. Not really. While I hope that things can get better, I honestly don't expect they will. I think that her floppy trachea is the culprit here and that the CPAP machine will be the only thing that will help. And I'll be floored if my daughter will tolerate sleeping with a mask on. And I'll be shocked if she doesn't destroy the machine within a week.

Which will leave us in the same behavioural boat, living day to day, reacting to her as we can, unable to really fix her outbursts because they're so uncontrollable due to her messed up genetic code and her wacky lack of sleep. Bringing me to my second feeling that all this behavioural intervention is also a waste of time. Right now, I really don't see the point in any of this.

Can you tell? Can you tell I'm feeling discouraged this week? And really tired, despite the 10 hour sleep I got one night this weekend? And hopeless? And overwhelmed?

There are so many things I should be doing and all I want to do is crawl under my blanket and go back to sleep. Or watch Olympics. Or play solitaire. Or do any damn thing that doesn't require thought or effort. But, I already did that this weekend and it's time to woman up and get back to work.

Until next time...

1 comment:

  1. oh darling! can i say that we were told tilly was one of the most extreme cases they had ever seen (by a university team studying sms across the UK) for her behaviours...in time spent in meltdown, severity of behaviour and the fact she has every single self harming trait on the damn list! and yet.......and yet......even though all of this is true we see improvements where we have helped....not experts....there are no experts we have found apart from us the parents! YOU ARE HER EXPERT!!! sleep...she doesn't, and yet as she gets older she learns what can be tolerated by us at night and what cant.....things are getting better, they will for you! I have said it before here but i really cant say it enough, even though i hear how desperate you are, even though i know (GOD HOW I KNOW) how bleak and pointless you feel, you are doing amazingly well! i did crawl into bed and pull the covers over my head. i did it for a long time! YOU ARE MAKING SNOWMEN!!!!! xxxxxx i love you and think you are fabulous, things will be light again xxxxxx