The day after Thanksgiving Miss Haven was scheduled to go in to sleep study….which means a lot of driving for mom while dad stays up all night watching her. It’s a 2 hour round trip drive and I do it twice each study - they have to be there at 8:30pm and have to be picked up at 5:30am.
To get ready for the study - if you’ve never had one - is about a 1 hour and 20 minute prep.
First they pretty much scrub her head, face, chest, and legs with this gritty stuff (see photo). It smells kind of like toothpaste but is very sandy. Then the chest and stomach straps are placed around her with the monitors hooked to that. Then she has both toes wired up for heart rate and oxygen levels. Once those are all in place and working they can start with the wires.
Here you can see Haven’s chest strap and face wires. The wires are stuck to her with a glue and then taped on. Only problem - Haven is allergic to tape! Doesn’t matter what tape it is…she is allergic to it.
After they wire up her face they wire up the head. The glue is horrible and I’m sure not at all comfortable to sleep with. I can’t imagine if my child was not cooperative……say like some of my nieces and nephews!!! I can’t imagine them sitting still for 1 1/2 hours while getting wires glued to them and then having to sleep with them on. Luckily my daughter is better than I would be at this.
As the night wears on you can see the happy child! This shows both straps and all the wires so far hooked up behind her. Haven did have extra wires this time due to the monitoring for seizure activity.
We are hoping for some good results from this study. This was the most Haven has ever slept at a study - she usually only sleeps 1 - 2 hours….this time she slept the entire time. She was also snoring with in 2 minutes of falling asleep and that stayed constant all night. Luckily they also video tape her during the sleep study as she was a crazy sleep walker (glad they have bars on the beds to keep her in). She was screaming so much and so loud the technician kept coming in asking if Haven was ok. Kris kept telling her yes that this is exactly what we’ve been waiting to show the doctors.
Saturday after we got home I gave Haven a long soaking shower to remove all the glue and tape residue but it didn’t help. Still two days later she is blistered from the tape and has a bad rash on her face.
We won’t have results for at least 2 weeks but am hopeful they can get to us sooner - we just have to wait for Neurology to look over her results first. Over this weekend she had us very concerned as each breath while sleeping also caused her chest to sink in pretty deep. We checked on her about every hour.