Monday, June 22, 2009

Scared of Sleep

We got Elijah's pulse-ox results today. The results were "abnormal but not at all dangerous to Elijah." Abnormal is definitely not what we were hoping to hear. Here's what happened: "Elijah had 120 de-saturations below 89% that totaled about 20min (for combined studies) over about 22 hrs of sleep". That doesn't sound so good to me. That means every night he's probably not getting the amount of oxygen he should for a total of 10 minutes.

Honestly, the results were a bit of a surprise to us. Any time we had looked at the monitor the two nights we had it, Elijah's saturations were fine. We didn't sit up watching it all night and I'm thankful that I didn't. Before I start beating myself up for not noticing the de-saturations, how would we have known? For both of the nights that we had the monitor, Elijah woke up in the middle of the night and spent the rest of the night sleeping (literally) on top of me. I didn't notice a thing. His de-saturations are definitely subtle. So, he's probably been doing this his entire life, we just didn't realize it. That makes me so frustrated and upset. Not getting good sleep is definitely bad for your development and it makes me sad that he's got one more thing working against him.

So, what's next? My awesome hubby (see previous post) got us in to see the sleep doctor this Wednesday - basically by calling and bugging the office people. :) They fit us in with a shorter appointment (we have a half hour when they usually like to do an hour). We have to meet with a sleep doc to talk about Elijah's history before they will order a sleep study. Hopefully we can do a sleep study soon so we can get to the bottom of the problem - we need to find out if the problem is brain-related or if Elijah has some sort of obstruction in his airway. I'm not really sure what the course of action is for either, but I'm already starting to envision Elijah's room with monitors and oxygen and that makes me sad.

Sometimes I feel like "what next?" Just when life seems to be plugging along, something else gets thrown at us. We'll deal with sleep apnea. It's not the end of the world, but at times it feels like it is. It's hard to put things in God's hands.

Sleep apnea would actually explain a lot when it comes to Elijah. He's never been a good sleeper (although, since his second set of HBOT, he has been sleeping better - falling asleep in the highchair and the car as the pictures illustrate). I'm glad we don't let Elijah cry it out - he can sleep in bed with us, he can sleep on top of me, he can cry for me in the middle of the night…as long as he's safe.

So, here we are in limbo. Waiting to know more, but a little scared of the sleep that could be harming our boy. I'll keep you all posted.

1 comments:

Anonymous said...

Lisa and Andy, I know it's all scarey but you are doing a good job. I know you know that God is with you and there are a lot of friends praying for you all, too. Sometimes it helps just to concentrate on the mundane and checking one thing off your list. And look at all the things that you have checked off the list. Elijah has accomplished so much. We are here for you - in case you need someone to lean on. Love, MomKat

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