So yeah, “Sweet Dreams” wasn’t exactly the most accurate title of yesterday’s post. “Nightmare” would have been more appropriate. The sleep study was awful, but it’s over.
Grayson did exactly opposite of what I thought he would. I thought he would be a mess for the set up (which took about an hour) but then go right to sleep when we laid him in the crib. HA. He actually was a little trooper while the sweet tech glued wires all over his head and chest, thanks to some cool light up toys and his Grammie, who came to help. But as soon as the tech tried to put the nasal cannula in his nose, he freaked out. Freaked out big time. He screamed and screamed and pulled the thing out. We tried everything to calm him down- his mobile, Veggie Tales, holding him, light up toys- nothing worked.
Finally, he fell asleep in my mom’s arms and she gently laid him down. My mom left, and I thought we were good for the night. That’s when I published the post. Then about two minutes later, he pulled the cannula out again and woke up when the tech repositioned it. Hysterics. The worst part about it was he couldn’t suck his thumb, which is his main self-soothing technique. Everytime he tried to put his thumb in his mouth and realized he couldn’t (because of the cannula), he broke out in fresh hysterics. At one point his screaming sounded very panicky- poor baby.
But his tired body finally gave up and he (mostly) fell asleep for the night. He did cry out several times in the night and his stupid feeding pump started beeping at 3 am, but thankfully he didn’t really wake up.
The tech woke us both up at 6 am (ugh) and Grayson was actually pleasant until she had to remove the wires adhered to his skin and scalp- ouch! More crying. I tried to wash the glue out of his hair but there was no bathtub- just a shower. I laid him on the floor of the shower on a towel and shampooed his hair and tried to get it out with a washcloth. That didn’t really work so then I just balanced him with one arm and stuck his head under the sink. I’ve since shampooed his hair twice more today- there’s still sticky stuff in it.
I asked the tech if he had any seizures and she said she wasn’t allowed to tell me. She did ask me if he always “chokes and gags” when he sleeps. Uhh….probably. It’s sad, but so much of what Grayson does is “normal” to me that I don’t really pay attention. Like when she commented on his super loud breathing when he’s on his back. Yeah, he does that all the time, but I don’t really notice.
I will be very interested to get the results of this test. She did say that if they find anything abnormal we may have to do another one. Nooooooooo!!!!
So now I don’t know how to feel about the tests next week. Yesterday, I really wasn’t worried at all about the sleep study- thought it would be “easy”, and it turned out to be one of the most awful things he’s been through. So do I worry about next week and then be pleasantly surprised if it’s just not that bad? Or not worry and just let whatever is to be happen. Ugh. I try to be level-headed and non-dramatic about all of Grayson’s stuff, but last night really caught me off-guard. And then the tech was telling me how much she’s learned about Mito and how it’s really scary. Yes, it is scary, but I don’t let myself be as scared as maybe I should be. Maybe it’s my defense mechanism.
Anyway, Grayson is fine- he took some good naps and went to bed at 5:30, happily wire-free.
My hero, leaving the hospital: