Friday, June 5, 2015

Sleep Apnea Sleep Study for Jake

At Jacob's last  check up with the pediatrician, she put in a request that he get a sleep study done because children with Down syndrome have a higher tendency to have issues with sleep apnea.

It took months for us to connect with the doctor, have our preliminary visit, then actually have the sleep study done.

I'd had no idea what to expect from the study, aside from the fact that Jake would be there all night long and they'd be monitoring his sleep patterns somehow.

We showed up at the hospital at 7 p.m. on a Tuesday night and met with the technician. She showed us to a room that looked very much like a hotel room complete with a queen sized bed, a couple night stands, and a chair in the corner.  There was a bathroom connected to the room, and a second room where I could sleep if I chose.  She pointed out the cameras that would be used to watch Jacob while he sleeps, then showed me all of the cables that would be attached to various parts of his body.

Jake was NOT impressed.  From the second she started trying to attach the cables to his body, he began fighting.  He'd kick, and scream, and yell, and push, and wiggle--anything he could do to keep them off his body.

We struggled for FOUR hours to get them on him, then to get him to lay down in bed, and to keep him from yanking the cables out of his hair and off his face.

FOUR HOURS.  I finally had to physically restrain him with both my arms and legs until he couldn't move, then wait for him to cry himself to sleep.  By the time he fell asleep at around 1:00 a.m. both he and I were a sweaty mess.

By morning, the technician verified that yes, he did have sleep apnea, and maybe I should get a sleep study done too.  Um, you'd sleep like a brick and snore too if you'd just fought Jacob for four hours.  That kid has stamina.  I'm just sayin...

I heard nothing for another six weeks, then finally hear from the pediatrician asking if we'd ever had the study.  I confirmed that we had and that we were waiting on results and were told it may take a few months to hear anything.  She was not impressed, so she made phone calls, and a referral to the ENT.

At his appointment this week, we were told that Jacob had obstructive sleep apnea and another form of apnea that affects his brain waves when he sleeps.  He will be getting his tonsils out shortly to help with the apnea since there is no way Jake will sleep with a CPAP machine.

The ENT said that once the tonsils were taken out, they normally do another sleep study.  I quickly informed him that there was NO WAY I was going to subject Jake to that study again. Not for a very long time.  He agreed when I told him the story and said that instead he'd do a follow-up with him after the surgery to make sure his airways are doing well.

Here's to hoping that will be enough, and we don't find ourselves in another all-night war of the wills!


Jade Graham said...

We know that cardiac patients with sleep apnea who are treated effectively for it have fewer complications treating sleep apnea

Cynthia Bowers said...

Susan, I went with through the same thing with my youngest child (she is 4) and has down syndrome too. I know it can be heart breaking to put your child through studies and how uncooperative children can be. Look into essential oils such as lavender for better sleep. Stay strong and I will keep you all in my prayers!