Our Sleep Study Experience

     Sleep studies are very common in children with Down syndrome, and are recommended for every child with Ds before age two. It is estimated that as many as 60% of children with Down syndrome will have an abnormal sleep study by the age of 4, according to the NDSS. Commonly, obstructive sleep apnea occurs in our children due to enlarged tonsils and enlarged adenoids. Because sleep studies are so common, I figured I would share my experience with ours. While it is just one experience, I am hoping it will help explain what to expect.
    Our sleep study was at Yale Children's Hospital in their Pediatric Sleep Study Center. We arrived for 7pm, and met our nurse Ana at the door. She showed us our room, which was one of two or three in the wing. It was a private room, right off of the nurses station. Inside the room were two beds. There was a television and a camera on the wall opposite the bed. There were two bathrooms and a fridge for patient food where I put Henry's milk and an iced coffee for me for the morning. 
      Ana showed me that the camera allowed her to see into Henry's bed only. She did a great job explaining the process, and spent some time before wrapping Henry to ask about his usual bed time and sleep patterns. I explained that we were evaluating Henry for a possible upper airway obstruction, as he currently has pulmonary hypertension and an enlarged heart, so we are trying to determine if this is due to an upper airway obstruction or the remaining hole in his heart.
     We chose a movie for Henry to watch and I got both of us into pajamas. I brought two piece pajamas for Henry which made it easier for the nurses to reach his chest and stomach. While watching Moana, I gave him a bottle to help calm him down and Ana came in soon to begin getting him suited up.
      There were many, many wires and sensors to place and Ana told me it could take up to an hour! It took us about 35 minutes from start to finish so it wasn't awful.
      She started by placing sensors on Henry's head using a special glue. He also had sensors on his chest, stomach and legs. He had a cannula in his nose that measured CO2 output and a small sensor above his lip that measured nose versus mouth breathing. He had an oxygen sensor on his toe that we covered with a sock. Ana wrapped Henry's head to keep all of the sensors attached and wrapped all of the cords into a large pony tail behind his head. Henry put up a bit of a fight during this process, but it definitely helped to have his milk, a movie on, and Ana's quick hands and calming voice.


      Ana left the room around 9pm and with a bottle, Henry was asleep within 15 minutes. I held him for a bit and then put him down in his bed. I then crawled into the other bed to fill out some paperwork. After eating a snack and drinking some water (I had come right from work and was starving!), I settled in.
        To be honest, I did not sleep much at all. I was a little afraid Henry would fall out of the hospital bed, as there was a small gap between the two rails. Essentially any time he moved, I instantly woke up and jumped out of bed to make sure he wasn't too close to the edge. I used pillows to try to keep him in the bed but I still was afraid he would roll on top of one. I wish we had a hospital crib for him, because I think we both would have slept better!

      Henry woke up probably about ten times throughout the night and was crying. I was able to get him back to sleep pretty quickly by either rubbing his back or giving him a little of his bottle. He mostly woke up because he was trying to roll but all of the leads and wires wouldn't let him. Typically, Henry wakes up at night and is up for hours before falling back to sleep. He actually slept better for the sleep study and I think it is because he was so busy fighting us to put the sensors on and then went to bed a little late that he slept decently. I slept in the bed with him for a little while to help keep him from rolling out of the bed.
       Ana woke us up around 545 and told us we were all set to go. Ana removed the sensors and washed Henry's hair to remove the glue. She validated our parking, we got changed into our clothes, and off we went! We ended up having two appointments for other things at the hospital that morning, so we changed into clothes and hung out at Atticus, an awesome book store down the street. But if we didnt have to be back at the hospital, I would have just gone home in my pajamas! I was exhausted but was so grateful that he slept. The experience was not as awful as I was expecting, but I do wonder if it will be more difficult next time to get the wires on him as he knows what to expect now.
     While I know there are some horror stories out there, I hope this helps ease a few minds. Our sleep study wasn't my most fun night away but it was tolerable and we made it out without any major meltdowns, for Henry or for me! I'm sure there will be more sleep studies in our future and hope they are as relatively painless as this one was.

So, to recap:

What: pediatric sleep study
Where: Yale Children's Hospital Pediatric Sleep Center
When: 7pm to 6am
Why: to check Henry for an upper airway obstruction and sleep apnea


What I Packed

Henry: two sets of two piece pajamas, clothes for the morning, socks, diapers, wipes, milk and a bottle
Me: pajamas, change of clothes for the morning
Miscellaneous: Henry's favorite blanket, snacks for me (since I had come straight from work), water bottle

Comments

  1. Sleep apnea is a common sleep condition experienced by men and women today. It is characterized by loud snoring, sleep disruptions, and shortness of breath when asleep. It is caused by the blockage or narrowing of the air pathway when the throat or tongue muscles become too relaxed during sleep dirty cpap risks.

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