Cooper had his first sleep study.
Achon kids need sleep studies for two reasons:
- Obstructive Sleep Apnea – this is where something is blocking the airway during sleep. Achon kids are typically very noisy breathers. Things that are usually obstructing the airway are tonsils, adenoids, tongues, voice box, small airway, etc.
- Central Sleep Apnea – this is where the spinal cord is not sending a message to the brain to breathe during the night. This is because of compression on the spinal cord, which can be common in kids with Achondroplasia. Kids can just stop breathing during the night and die. Often this can go unnoticed and is usually just termed as SIDS. But because of its predominance in kids with dwarfism, it’s now standard to get an MRI and sleep study ASAP after birth to prevent any problems.
Cooper never had a sleep study done because his MRI showed extreme compression so emergency Decompression surgery was required. He had also been given the clearance from ENT that his tonsils looked good for now. So we were told just to watch for changes and skip the sleep study.
About the sleep study:
WORST NIGHT OF MY LIFE
It takes at least 45 minutes to hook your child up to all the wires and cords. And of course your child is screaming during the entire process. Which is actually good because it wears them out and they fall asleep relatively quickly.
I really wish I had been warned of what a sleep study entails before we got their. When we scheduled the appointment I asked all the questions I thought I needed to. I was told the only thing I needed to bring was his PJ’s and a favorite blanket. I was told “I would be in the next room with a chair” so I figured it would be a rough night trying to sleep in a hospital chair. They also asked if we needed a bed or a crib for Cooper. Duh, a crib.
So we show up and there is a bed. Great. So after the sleep tech informed me they like kids to be in beds so the parents can comfort their children and keep them from pulling out the cords. So after about 10 minutes of Coop trying to fall off the edge of the bed, she finally got me a crib.
I really wish I had been told to take a nap prior to the sleep study. No one told me I would be up all night filling out paperwork. I was given several pages front and back of questions I needed to answer throughout the night. How fast did he fall asleep? How often did he make any noise and what time? How often did he gag and what time? How often did he roll and to which side and when? Etc. Are you kidding me?
Cooper woke up screaming and trying to rip everything off around 2 AM. I tried to comfort him with his now spoiled milk (Our prior stays in the hospital we would just ask ‘hey can I get a bottle of milk?’ ‘hey can you warm this up for me?’ ‘hey can you put this in the fridge?’ Not at a sleep study, because I couldn’t leave him to go get milk at the cafeteria, and there was no fridge or microwave available – but when I quickly ran to the restroom the techs were popping popcorn and settling into a movie) So being told to prepare for that would have been nice.
After Cooper had been screaming from 2 Am – 4 AM, the tech finally came in the room and got mad at me for not being able to get him back to sleep. And that they might as well just send us home because not sleeping during a sleep study is pointless. So they finally let us go at 5 AM. They ripped all the cords off him and left him covered in the stickiest goo and wax all over in his hair. After I asked how I was supposed to keep my car clean they did give us a hat to put on him. Thanks.
We both spent the entire next day recovering and the following three days removing sticky stuff.
And we don’t have any results yet. It’s been almost two months and I’ve called twice. His oxygen never dropped so we are praying for good results and to never have to do that again.
So avoid a sleep study at all costs. We learned our lessons.