Friday, November 26, 2010

Sleep Study

     On Wednesday night, B had a sleep study. She still is somewhat sleep disordered and will sleep for a very long time, rarely seeming rested when she wakes up. She has been better about going to sleep, though.
     So we went to Children's Hospital on Wednesday. B had it in her head that it meant staying up all night, like she does for EEGs, even though I kept explaining it was a study of how she sleeps.
     Andrew came with us, which was a big help, because she was NOT happy once all the electrodes and monitors were attached. She became particularly angry about the tubes under her nose to measure her breathing. She got mad at me, Andrew, and the nurse and it took quite awhile to calm her down to sleep. She has absolutely no patience right now, a side effect of the Topamax, and while she hasn't had many seizures all week quite frankly, unless she stops experiencing such mood and anger issues, I don't think I can keep her on these meds.
     Anyways, Andrew left and I stayed. They provide a bed for one parent to stay. Well, not a bed so much as an instrument of torture, designed to make parents sit up all night weeping and swearing they will never try to sleep at the Hospital again. I experienced the same thing after her birth, a memory I had a lot of time to think about as I lay on the carefully disguised rock they call a mattress on Wednesday night. When she was born I spent everyday for a month in the Special Care Nursery, and all they provided were hideously uncomfortable chairs. Oddly high and uncushioned chairs, to mothers trying to breastfeed sick babies and who often had stitches in their vaginal openings. I developed a bad infection and they threatened to open me up again.
     When they finally moved her to a ward they gave me some fold down contraption, old, plastic, and positively hilly in all the wrong areas. It felt like sleeping on misshapen dentist's chair. One night a nurse felt sorry for me and told me I could sleep in a spare bed in B's room, and another nurse the next morning was just livid with me for that. The hospital felt hostile to parents. If I hadn't been so exhausted and emotionally blank at the time, I would have made a complaint. All I could think about was getting her home, though.
     So on Wednesday night I just could not sleep and had to keep getting up to move around. B finally fell asleep, but the nurse had to keep coming in and adjusting all the wires on  B's  head. B grew furious, and really, bad med reaction or not, I totally understood. By four in the morning she had stopped all cooperating and refused to let the nurse touch her anymore. I told the nurse to get everything off her, because I knew that girl would not be sleeping again. And she didn't. She read and watched TV, and at 5:30 a.m. we bundled up and caught a bus. We went downtown and got some food. then we came home.
     And slept.
     And we still need to do a 24hr EEG. Yay!
     I am pretty sure she will not grow up with an incredible interest in medical science. I don't blame her.
     But today we had fun. I kept her home from school to have fun with the snow, and pulled her in a sled to the Cafe for Mountainous Marshmallow hot chocolate. No mean feat, since she weighs a ton. I am convinced she eats rocks when I'm not looking.

1 comment:

  1. I feel the same about Children's Hospital. There is something in the vibe that is expressed that comes across as "you are irritating to us because you are here but we will try and make do if we have to". As if parents do not have to be there to advocate every step of the way and emotional support our terrified kids. Our role is just as hard and complex and certainly more unrelenting. We can't just walk away from our distressed child.