Thursday, March 28, 2013

Sleeping Beauty & her Bi-pap

Since 2009, Jaycee's obstructive sleep apnea has been treated with a c-pap or a bi-pap machine. People with Down syndrome are more at risk for sleep apnea due to their smaller airways and low muscle tone. Usually with children, removing tonsils and adenoids fixes the problem. Jaycee did have this procedure but her apnea persisted. I'm not sure how many young children with Down syndrome use bi-pap machines to treat sleep apnea. I personally do not know of any. Jaycee started using hers at age 3.

For the last few years, our nights have looked pretty similar. First, her daddy tucks her into bed. She signs "dad" if I try to take her to bed. They do a whole routine now featuring her Olivia the pig dolls. Then, I wait on her to fall asleep. When she's good and asleep, I attempt to put her bi-pap mask on. The mask actually fits over her entire face-eyes and everything. We searched for years for this mask and was so happy to have found it. When we first started using these machines, she would hit, slap, or swat at me in her sleep when I tried to put the mask on. She would scream or cry. It may have taken a couple of hours each night for me to actually get the mask on her. Over the years, she has gotten use to it. Most nights, she lifts her head up to assist in the mask application. Thank goodness it is much easier now!

I always check on her before I go to bed. If she's pulled the mask off in her sleep, I put it back on again.

Here she is asleep with it on. Notice how she is laying. She is laying kind of hunched over with her legs sort of under her. Weird sleeping positions are associated with sleep apnea because they are trying to get good air in. I've also just heard that kids with Down syndrome sleep in strange positions because their low muscle tone gives them more flexibility. I don't think I could sleep like that if I tried!

One important thing we have learned is that the placement of the machine is important. Because the machine has a water chamber to humidify it's air, the placement is critical. If it gets knocked over and the water spills, that would be very bad for the machine. Here is where we keep her machine:

It just so happens my mother-in-law picked out the perfect bed for Jaycee without her even knowing it. She got this bed pre-sleep apnea but it's worked out great. The bed has drawers underneath it. We put her machine the drawer and she can flop around all she wants without turning the machine over. I forgot to tell my parents about this during Jaycee's last sleep over at their house. When they checked on her, her machine was upside down. Fortunately, the water did not escape and ruin the machine. This is something we have to think about when we are away from home.

Jaycee's tolerance to her bi-pap has greatly improved over the years. I always have hope that her yearly sleep study will show improvement and will say that she no longer needs her machine. However, that moment hasn't came yet. I still have hope. It would be such a huge thing for her if she ever got to the point that she didn't need her bi-pap. Maybe one day....A girl can dream!

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