At Eli's 2 year checkup I asked his pediatrician if she thought he needed a sleep study, she said no, he didn't need one. Then at his 3 year checkup I said several of my friends who live in the area who have kids with Down syndrome who are younger than Eli have had sleep studies and that I'd like to get Eli one. She told me unless he was sleeping poorly, there was no need. Finally at his 4 year check up, I told her that I wanted him to finally have a sleep study. I told her all the reasons why. She finally agreed.
That was in March 2018. It took 5 months to get it authorized and scheduled. When the day finally arrived I didn't quite know what to expect. But I had heard horror stories so I was a little apprehensive.
The hospital told us to arrive at 7pm. I thought this was perfect because his bedtime is 7 if he doesn't take a nap. So we loaded the car and after 15 rounds of singing Baby Shark at the top of my lungs and poking his leg to keep him awake, we arrived at the hospital.
We checked in and were told to wait to be registered. By the time they called our name it was 7:35. Once we got our wristbands and signed all the papers, we were escorted to the sleep study area of the hospital by a friendly technician who would do the sleep study.
By the time we made it to the room where we'd be sleeping, it was close to 8. Eli was getting tired, but I knew we had a long road ahead before he could sleep.
The tech told us that he had to get his stuff ready. After about 30 mins he returned and told us that we could get Eli's pjs on. As we were dressing him, the tech rolled in a tray full of wires and leads and tape.
He started by putting leads on Eli's legs to measure muscle movements, plus a pulse ox to measure his oxygen levels. He then placed leads on his chest to monitor heart activity. Then we zipped up his pjs. He placed bands around his chest and stomach to measure breathing effort. He went on to place the leads on Eli's head to measure brain activity. My husband, Eric, held Eli's hands so he wouldn't take the leads off. At first Eli didn't seem too bothered.
But that didn't last long. He started crying and saying "all done" and trying to get loose so he could rip the leads off. We tried distracting him with books, his iPad and our phones, but he was not amused.
The wires kept getting tangled because he was moving so much. The whole process took about an hour. By this time Eli was over tired and mad. If I could go back and do it again, I would have given him a nap.
Then the tech had to put on his nasal cannula to monitor his breathing. Eli hated this part the most. Once he was all taped up and all the cords were detangled, the tech told Eric to get comfy, he turned out the lights and then left the room.
It took about another 30 minutes before Eli calmed down and finally fell asleep, by this time it was around 9:45 pm. Eric relaxed his grip and as soon as he did, Eli instinctively tried to pull out the nasal cannula in his sleep. The tech had to come in several times and adjust things. Eric ended up sleeping (read: laying awake all night) with one arm across Eli's chest to keep his arms from moving. It was obviously not a great nights sleep. Eric couldn't get comfortable. Every time Eli moved, Eric tightened his grip to make sure Eli didn't pull anything off.
We finally got the results from Eli's sleep study back. Some people get immediate results, for whatever reason we had to wait 3 weeks. Eli was diagnosed with severe obstructive sleep apnea. The next step is to see an ENT to discuss the results from his sleep study and possibly look into having his tonsils and adenoids removed. I'm sure you can see why I'm frustrated I didn't advocate harder to get a sleep study sooner. I'm finally finding my voice.
If you are prepping for a sleep study with your child, here are a few pointers:
1. Arrive at the hospital in comfy clothes you can sleep in and leave in the following morning so you don't have excess stuff with you. Dress in layers in case you get cold or hot.
2. Eat a big dinner before you come because this process is exhausting and you probably won't be able to eat while you are there.
3. Bring water and earphones so you can listen to music or a podcast after they fall asleep. Use the restroom and make sure the water, your phone and earbuds are with you when the process starts because you may not be able to get up after your child falls asleep.
4. Do not plan anything for the following day. Call in sick to work, load up your Starbucks card and have plans for someone to help you the next day (respite, grandparents, babysitter, anyone haha!)
5. Advocate. Advocate. Advocate.
You've got this!
-Michelle
Severe OSA :O you did a great job advocating for the testing. We’ve had some pushback for another test (Swallow Study) but your story has given me confidence to not settle until we get one scheduled. Thank you so much for sharing your experience and the details of the Sleep Study!