Sleep Study Update

Hope's sleep study went very well. When we arrived we were asked what time Hope normally goes to sleep. She normally doesn't go to bed until somewhere between 10pm and 12am. She sleeps about 6-8 hours each night and then takes an hour or two nap in the afternoon. This kid doesn't need much sleep. The technician wanted to capture 6 hours of data and so they wanted to put Hope to bed sooner than her normal bed time. At about 8pm they started hooking up all the electrodes and so Hope really couldn't get out of bed after that point. She is used to being cuddled and rocked before her 10pm bedtime so she didn't like not having that.

She cried and whined until about 11 pm and then fell asleep about 12am. They turned her oxygen off and turned her vent pressure down from 12 to 8. Hope didn't even notice. We figured that in order to get all the data they wanted we would be staying the full time (until 7am). Hope had a different idea though. At about 3am Hope woke back up. We tried to let her fall back asleep until about 4am at which point they decided to end the study. They felt they had plenty of "proof" that she did well with everything, so we packed up and headed home.

We haven't heard from her pulmonologist yet to formally discuss the study but they paged the doctor and they were comfortable sending Hope home on the reduced settings. We don't know what the official plan is from here but the next step is to schedule a bronchoscopy for Hope to see if her airway is less floppy than it used to be.