Hat Head

We were expected at the hospital by 8am for Taylor's EEG to be hooked up. Normally that would mean waking her up because she usually sleeps until about 9. But today she was up early, so I was glad that I didn't have to wake her. I gave her a quick diaper change before I had my shower so that once I was ready I could just grab her and go. When it was time for the 'grab and go' I discovered that she had pulled her NG tube out. C.R.A.P. I was going to hook up her feed after the technician got all the probes on her head, so I grabbed all her tube change supplies and shoved them in my purse. Off we went.

She had a really rough time with the applying of the probes. Normally with the hour long EEG's, they attach them with paste, put little squares of gauze over each one, then wrap her head. But with the 24 hour EEG, they need to make sure that the probes don't come off with her moving around. So first they paste them on the same way. Then they saturate the gauze squares with liquid glue, put them over top each probe and use blowing air to glue them firmly against her head. She did not like that part at all. The tech went as fast as she could, but not fast enough as far as Taylor was concerned. Once that torture was over-with and they wrapped her head and put the little 'hat' on, I got to subject her to further torture by putting a new NG tube in. What fun! I then got her fed and she passed out, slept soundly like a baby for two and a half hours!! Thank goodness because we were stuck in Neuro for a long time before her bed on the unit was ready. I must say she looks pretty adorable with the little hat they put on, but she's going to have some pretty mean hat head when it comes off!!!

I think it was about 1pm by the time they moved us upstairs. They went through the instructions with me on keeping her in the crib so that she stayed within the video range, pressing the button every time I witnessed a seizure, and that I could not leave the room. Normally when we're in hospital, it's okay to leave her to get coffee, have a meal, run an errand. But when you're in for seizure monitoring, they are very strict and someone needs to be in the room with her at all times.

I did get out for a couple short breaks while a volunteer sat with her. Otherwise I was in the room the whole time. I haven't really sat and stared solely at her for long periods of time pressing a button for every seizure so I was quite surprised that I was witnessing around 50 seizures an hour. Multiply that by the number of hours in a day and that is an INSANE amount of seizures. More than ever.

She was very irritated being confined to the crib all day. I don't blame her! I was irritated being confined to the room, all she had was a crib. By bedtime she was completely fed up and I could not get her to settle. So much crying. It's very hard to take. She finally crashed out, with a very red face, at around 11pm.

Goodnight world, we're exhausted!