Sleep Study!

Lyla had a sleep study Monday night at Gillette. After stopping for chicken nuggets at Mom and Dad's, Lyla and I headed to the hospital. We got there just in time to make CLAY PENS -- the best, BEST craft night craft ever. It was awesome.

Lyla did a great job patiently watching ponies and sitting still while getting her head, face and neck covered with stickers. She also had stickers on her legs and chest and the two belts across her chest and tummy. She was uncomfortable, but tolerated "all this crap on me" very well. I was proud of her for being such a trooper. Last time she had a study was just before she left Gillette last time and it wasn't fun for anyone. Thankfully, reading a book about sleep studies and making it as much like a sleep over as possible made the night successful. 

Before we left, Brenda gave me a CPAP mask and explained how to use it. She said she wasn't sure the doctor would want us to do a follow up, but that I should work with Lyla to get her comfortable with it -- until she can wear it for 10 minutes twice a day -- and then call back for a follow up. 

After talking with the doctor Tuesday night, we'll have to keep working on the CPAP mask because Lyla will need it long term to keep her breathing safely at night. Dr. Cavanaugh, one of the lung doctors who saw Lyla at Children's and who also happens to be a sleep doctor, is the one who read Lyla's study and he pointed out a few things: 

1) Lyla had great sleep cycles. She had 6 REM cycles, which he was very happy with. 

2) Lyla has Central Apnea. During her sleep, she stops breathing for periods of 7 seconds during each of her breathing cycles. In the past, people have noticed that she has an irregular breathing pattern and now we have the data to better understand it. Dr. Cavanaugh said that lots of people have the pauses, but the pauses combined with the oxygen desaturations Lyla has qualify her as having central apnea. 

Central Apnea is different from sleep apnea because it is caused by Lyla's brain, not by airway obstruction. Her brain does not tell her body to breath during that 7 seconds, so she's essentially skipping breaths she needs to keep her oxygen levels in the healthy range. 

3) Lyla has Hypoventilation, a condition that means her oxygen is chronically low and her body is not effectively expelling carbon dioxide from her body. This is the reason Lyla had such high carbon dioxide when we went to the hospital last month. Even during the sleep study, I noticed the CO2 monitor showed she was in the mid 60s when she should have been 50 at the highest. 

The doctor said that as Lyla grows and her lung volume gets larger she might not struggle to ventilate properly, but until then we have to help her get that carbon dioxide out of her body or she will get back to that highly acidic state. He said she does not need to live with a trach, but that she will need CPAP to make sure her body stays at a safe level. 

CPAP stands for continuous positive airway pressure. The mask blows air into her nose to make sure there is enough pressure in her airway to get the right balance of oxygen and carbon dioxide.

For now, I'm working on getting her comfortable wearing the headgear and mask. She has done well and wore it for about 8 minutes last night while we read before bed time. She calls it her SCUBA mask and likes when I listen to the air move through the tube when she breaths. Soon we'll have the actual CPAP machine so she can get used to wearing it with air blowing into her nose. When she can fall asleep wearing the mask we will go back for another study and they'll play with the levels of oxygen to determine the right settings for Lyla's body. 

We've got a visit coming up with the lung doctor so we can better understand all of this and what we need to do to keep Lyla healthy. We have already seen a HUGE improvement in Lyla's energy levels, her physical abilities and her happiness. She is loving life and doing new things like dressing herself more, brushing her hair, getting into her car seat herself and getting her own snacks and drinks from the fridge. She LOVES doing her "homework" books and is proud to show me her letters, lines and drawings.  

Adjusting to CPAP will be hard, but if Lyla benefits from it the same way she is benefitting from the oxygen, she'll have a whole new world open to her. I feel bad that we didn't know these things sooner. How quickly might she have recovered if we were able to get her on O2 and CPAP earlier? Have we lost the opportunity for her to fully recover? I guess we'll never know. Obviously no one knew this was happening -- even our team of doctors -- so the best we can do now is better understand Lyla's spinal cord injury and how it affects her breathing, then help her get comfortable with the equipment she needs to keep her body healthy.