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Thursday, January 23, 2014

Henry's Sleep Study

It was every bit as bad as I was expecting. I'm just glad it wasn't worse.

Why did he even need a sleep study? His ENT said he might have sleep apnea because he snores and because it's common in people with hypotonia. As much as I didn't want to do the study, I couldn't deny that it might provide important information about Henry. As much as I don't want him to have sleep apnea, if he does, it'll be better to find out soon.

You can probably imagine about how much fun a sleep study on an infant might be. On top of that, Henry is fussier in the evenings than most babies probably are. Definitely more than Calvin ever was. Bedtime has always been super hard for Henry. He has been a great sleeper for the most part, but falling asleep that first time in the evening is hard for him. But the real problem is that out of nowhere, the night before the study, Henry became a terrible sleeper! Could be a growth spurt or a cognitive leap or just terrible timing, but the night before the study my little guy who would ordinarily sleep 4 or 5 hour stretches was waking up every 1-2 hours. So I'm thinking, "Great. This sleep study is going to be a disaster."

It wasn't a total disaster. But the bad experience started even before we arrived at the sleep lab. Henry started crying as soon as the car left the garage and proceeded to wail the entire hour long drive. The drive could have been slightly less than an hour, but I got lost because like an idiot I didn't realize my lane was becoming "exit only" and I got forced off at the wrong exit. #facepalm

When we finally made it to the pediatric sleep lab, at least we weren't late because I'd left really early. The lab tech who worked with us, I think her name was Adriana, was very sweet and friendly, so that was a blessing (although she still got irritated later on in the evening... I'll get to that). There was a long hallway lined with small rooms for sleeping. There were also bathrooms, a kitchen, and the control room. Adriana showed us to our room and showed me how to raise and lower the sides of the crib. She told me to get Henry dressed for bed. The room had a hospital crib - the tall kind. The room also had a chair that unfolded into a very uncomfortable bed, a small desk, a TV, a sink, and table full of wires and small monitors. Adriana went to help another family check in. There were three babies in the lab that night. When she came back, she started attaching the wires to Henry.

One wire attached to his foot to monitor his oxygen levels. 3 or 4 attached to his shins to check for restless legs syndrome. 3 more on his abdomen and chest... can't remember exactly what those were for! Heart rate? CO2 levels? Sorry. Anyway, she put his pajamas on over these wires and pulled them into a bundle behind his head. I was thinking, "oh, that's not so bad!" She wasn't finished.

Over his pajamas, she added two elastic belts to monitor his breathing and there were wires attached to both of these. Then she started to attach wires to his head with this white, goopy, paste and gauze. She did a few, then had to go help another family. I thought again, "Ok, still not too bad..." She still wasn't finished!

At this point, I was thinking it wasn't too bad.... But I had no idea how many more wires were coming!

Henry was totally in a good mood as he was having the wires attached! 
Adriana came back and added more wires to his head Then she started on his face. The wires attached to his face with little foam sticky pads. There were wires to check eye movement and jaw movement, there was a "snore mic," and one of those little nose things with the two tubes that go up your nostrils (I'm pretty sure that is the technical name for that thing).

As Adriana started putting things on his face, Henry started getting irritated. Who could blame him?!
This still isn't all the wires, BTW.

I actually didn't get a good pic of Henry with all of the wires attached because he started getting fussy. But, you get the idea.Once Adriana turned the lights off and left, I fed Henry a bottle and he actually calmed down and went to sleep pretty quickly (whew!). I was praying that he'd stay asleep for a few hours, but it just wasn't meant to be. After about an hour he woke up and he. was. pissed. 

Adriana had told me I could stretch the wires out and sit down on the fold out bed with Henry, but I didn't want to mess with them because there were so many! So I would stand and hold him and give him the bottle or pacifier, and he'd calm down and fall asleep, but every time I put him back down in the crib he'd start screaming again. This went on for about an hour. I was starting to despair. I was thinking we were going to have to bail out completely and do it all over again another night. I was getting worried that even if we did stay, he might not sleep at all and they wouldn't get enough readings and we'd have to do it all over again. And I was feeling so sorry for my poor little Henry! He looked so uncomfortable and upset.

I noticed that a wire had come unstuck and I was worried about it (I didn't want anything to go wrong that might make them ask us to do the whole study over again!) so I went to the control room, which was right across the hall, to ask Adriana if it needed to be replaced. Here's where she got irritated. She came back to the room with me and exasperatedly told me that he was sweating off the goop holding his head wires on and that she really needed him to calm down before she could re-attach anything. I could have gotten irritated with her for being irritated, but I didn't. I managed to stay calm and she helped me move the bundles of wires so I could sit on the fold out bed with him. It took more time, but eventually he did go back to sleep and I was able to put him down. Adriana came back and re-attached the wires that had come off. 

That was the only major cry-fest of the night. He still woke up every 1-2 hours as he had the night before, but it wasn't toooooo hard to get him back to sleep. I managed to sleep in short stretches in-between soothing him. The study was supposed to end at 6am. Henry woke up at 5:40 and Adriana told us we could go ahead and go. She said they got some good readings and that it was ok that it was broken up instead of longer stretches of sleep. Henry was smiley and content as Adriana removed all the wires. After she was finished, Henry still had those round stickers stuck to his legs and torso. His face was sticky from the sticky pads holding the wires on and his hair was full of that white goop. My poor little guy. He seemed happy, though, and he didn't cry during the drive home. 

I'm just glad it's over! I know we'll likely have to do it again one day, but I'm not going to think about that right now. This one is over at least, and we'll hear the results when we see the ENT for our follow up. 

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