Sunday, April 24, 2011

Kind of like camping

Over the past several weeks, Will has really been having a hard time sleeping. He can't tell us what is going on, so it is up to us to figure out what is going on. A lot of times, we can guess correctly. And sometimes, we just can't quite figure it out. This is both frustrating for Will and for us when this happens.

We aren't sure if Will is having some anxiety over moving (which wouldn't be unusual right now, given what I recently wrote about Luke). We aren't sure if he is in pain. Or if he's having lots of small seizures. Or if his muscles have started tightening as he sleeps. We just don't know.

What we do know is that Will isn't sleeping. He has had a couple of seizures around bedtime despite his current anti-epileptic dosage increasing. He is generally crabby - perhaps because he isn't sleeping?

I mentioned this to Will's CP doctor, who we go to for all things special needs related. I know that it isn't uncommon for kids with CP to sleep poorly, but surely there had to be something we could do. I need a lot less sleep than I used to before kids... but waking every 2 hours at night is starting to take its toll.

Will's doctor recommended a sleep study. This sounded so simple. Something we should have probably done a long time ago. I can, after all, count on two hands the number of times that Will has truly slept through the night since he came home from the NICU. I'm kind of tired.

So they squeezed us into a sleep study slot tonight. We got here a little late from our Easter dinner with Stara and family, and they quickly ushered us into our room. Will was in a good mood. For those of you who have undergone sleep studies, you understand that he didn't stay in a good mood for long.

The first thing they did was have me change Will into his pajamas. I also set up Will's night time feeding pump.

Next, they attached 10 EEG-like diodes to different locations on Will's head. Then they attached 2 more to the outsides of each eye. Then they stuck 2 more to his jaw. Tape and stinky glue all over the place. I guess the idea is that for thrashy sleepers, they don't want the diodes to come undone. For my son who is only able to move from his side to his back while he sleeps, this was overkill and made him so mad!

Then they stuck 2 diodes to his back, another 2 to his arms, 4 to his legs, and velcroed 2 belts around his chest to measure his breathing while he slept.

Will screamed in protest the 30 minutes that it took to set everything up. He wasn't sad or scared. There were no tears. He was just beyond mad about what was happening.

Just when I calmed him down and got him settled into bed, our tech came back into the room with a pulse-oximeter for Will's toe (he's used to these!) and the final kicker - nasal cannula for his nose. Of course this meant more tape for Will's face, more agitation that he couldn't go to sleep, and more anger over not being able to stop what was happening!

Nothing about a sleep study is restful, I'll tell you that! What a misnomer.

So now Will is finally sleeping. Not sure how, considering all of the electronics taped to his body. The lights are out completely. The sound machine is on. The tech is watching Will's every move on an infrared camera over my head.

It is kind of like camping, only not. I can't watch TV, can't talk on the phone, and when I need to see something, I use the flashlight app on my smartphone... I am trying to type as quietly as possible!

As I am finishing this post, Will is rousing at his typical 10pm time... the first of many times each night that Nate or I goes into his room to adjust him, loosen tight legs, or spray his nose with saline. I pray that the annoyance that Will is going through tonight will lead his doctors down a path of discovery which will enable Will to sleep restfully through the night.

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