I’ve talked about routine exams kids with Ds need: eyes, thyroid, and sleep studies to name a few. While we were tackling g-tube and heart issues, our other friends tackled oxygen and sleep apnea issues. Again, low muscle tone = sleep apnea.
We’ve never had symptoms (snoring, stopped breathing) but Hannah needed a study before age four. I figured winter time was the best lull to get it over with. All the other Ds Moms have painted a difficult picture for me and age 3-5 is the hardest age for cooperation - ack!
Hannah and I arrived at the Children’s Liberty Campus around 6:40pm - we didn't go back to our room until maybe 7:10pm? I chased Hannah around the lobby - I think most people there were also for sleep studies. All the Moms told me to go to Liberty Campus b.c it’s more quiet than the main campus in Clifton.
Hannah slept for 10 minutes on the way there, too, of course.
After getting settled, our tech and another clinician came in to start applying sensors. Thankfully they had a TV in there so Hannah watched SING which kept her distracted.
Two sensors on each leg to see if she had restless legs. I think she had at least 3 on her torso. A pulse oximeter on her toe to watch her oxygen/heart rate. One under each eye to measure her REM. One on each side of her jaw and one under her chin for any grinding. I don’t even know how many were on her head - at least 5? And then the oxygen cannula as the cherry on top.
Hannah shockingly went with the flow. Didn’t even fight the cannula! I laid in bed with her at 8:30pm and once I got her comfortable on her side and spooned her, she was asleep fast - probably by 8:45pm.
I tried to get settled in my awful “bed”/chair - I’m not sure I had it reclined all the way? Hannah was coughing from about 10:30 - 11:30pm and trying hard to find a good position. She’s a stomach sleeper, so she was restless. She tossed and turned a lot - I woke up every hour. The tech would come in now and then to adjust sensors or the cannula.
Finally the tech got the wires in a good position by 2am so I had my biggest block of sleep from 2-4am. Hannah slept fair the rest of the night.
At 6:15am the tech came in to wake us up - ugh. Sleep study over! She didn’t say anything about how it went - she isn’t who would tell us anyway - the physicians have to assess all the data to see if anything is disturbing Hannah’s sleep - we have our follow up on March 3rd which feels like a long time away!
I felt like a zombie all day Sunday... it was the type of exhaustion where even if I did lay down, I’m not sure I would have fallen asleep. Glad it’s behind us and hoping nothing shows up on her study!
