Jaxson was an AMAZING sleeper as a new born. We used to have to wake him up to feed, and he would stay soundly asleep all night long. We were very lucky!! His amazing sleep habits lasted till he was 7 months old, then it happened….. Jax got RSV and was pretty sick for a month. Since then he doesn’t sleep. Tosses and turns what seems like all night long.
At first we blamed his horrible sleeping on the 7 back to back ear infections that followed the RSV. A very logical explanation to bad sleep. unfortunately his horrible sleeps continued on even after we got the ear infections under control. Enter teething. Of course teething starts and clearly thats why he wasn’t sleeping. right?
We brought up our concerns with the pediatric ENT in the spring. We asked for a referral for a sleep study, and she totally agreed with us. We couldn’t blame bad sleeping on ear infections and teething forever. Especially since kids with Down syndrome have a much higher rate of sleep apnea and sleep issues. In Canada it is standard practice for children with Ds to have a sleep study done within their first few years of life regardless of reported sleeping issues.
Around mid summer we couldn’t take it anymore, we stared doing something we swore we would never do. Co-sleep. It was the only way we could all get some rest (especially Alex who is on ‘night duty’ during my work weeks). Getting up 5-10 times a night was getting to be too much.
Finally we received a call with our sleep study date and it couldn’t come soon enough! It seemed like every night was worse than the night before. Jax tosses, turns and sits up over and over and over again. Poor guy wakes up exhausted and barely makes it an hour in the morning before needing his first nap.
The dreaded sleep study finally arrived. I don’t know how it happened but somehow I was nominated as the parent that was going to stay with him for the night. I knew it was going to be a long night but it was far worse than I had imagined! We arrived at 8pm and were sent upstairs to the sleep clinic. By the time the tech had Jax wired and hooked up it was pushing 9:30, WAY past his bedtime. I don’t understand why they don’t adhere to a childs normal sleep routine if they want to properly study it. But hey, I’m not the expert.
The night was way way way longer than any night I have ever experienced on a nightshift working EMS. Jaxson was all over the place. At one point he woke up screaming (VERY unlike him) and it took me half an hour to calm him down. Between a restless baby and the thought of someone watching me sleep behind the camera I think I may have got an hour of sleep all night long. At 4:30am the tech came in a put CPAP on Jaxson as a ‘trial’ and thats when I knew. Of course she had no answers for me when I asked her, but she didn’t have to tell me anything. Jaxson was out cold from that point on until 6am when they came in, turn on the lights and kick you out (yeah, real fun).
Thank goodness we didn’t have to wait long at all for answers because we had an appointment with the sleep doc the next day. The results showed that Jaxson has severe sleep apnea. Waking on average 20 times per hour, no wonder why he is bagged during the day! Jaxson doesn’t quit breathing for long periods of time (which we already knew that). His apnea is obstructive apnea. It’s a combination of probably slightly enlarged tonsils/adenoids, small airway, and low muscle tone (causing collapse of his airway when completely relaxed). All of these things combined make it hard for him to get proper air exchange when he goes into a deep sleep. His body works harder to take deep breaths and he wakes up.
The solution: Jaxson will be using CPAP to sleep. Something new to add to our normal. For those of you that don’t know what CPAP is, it stands for Continuous Positive Airway Pressure. Meaning that Jaxson will wear a teeny tiny mask over his nose that will be constantly blowing air into his nose to keep his airways splinted open (by the air flow) to allow for proper air exchange.
Fingers cross that we get set up with his CPAP machine this week! I feel terrible putting him to bed now that we have a diagnosis and no treatment yet. Thank goodness we don’t have to wait for long. Now fingers crossed that we won’t have to pay out of pocket for this huge expense!
It will be interesting to see how Jaxson handles the mask and his new sleeping routine. We are super excited at the thought of sleep. The biggest thing of all is we can’t wait to see what a constant, restful nights sleep will do for Jaxson and his development. Stay tuned for the update!!
1 thought on “Sleep Would Be Nice”
I’m learning more about Ds all the time, thank you so much! I’m sure the Cpap will make a world of difference for you all. So good you were his advocates and followed your hunches. All the best.