Update: Rhema is sick with the flu. EEG cancelled!
Rhema will have a sleep deprived EEG Tuesday morning.
That means I have to keep her up all night tonight and then drive her into Boston for her EEG, during which time they expect her to sleep.
A couple years ago when Rhema did her first BEAM study at Children’s Hospital, a technician sat us down and told us everything that would happen. It was 12:30 in the afternoon when he explained that he expected Rhema to sleep during the 4-hour study. Brandon and I stared at him for a moment and then, as politely as we could, laughed in his face.
“Oh, she won’t sleep.”
“Oh, yes she will.”
“Oh, no she won’t.”
He explained that he had been doing this for a billion years and was a master at getting the kids to sleep during the test. He said that once the leads are on, he lays the child down with mom or dad, turns down the lights, turns on music or a video, and the kid always sleeps.
We bet him a pizza our kid would not.
Needless to say, I have a handful of reports from BEAMs and EEGs performed over the past couple years that say, “Unfortunately, we could not achieve sleep.”
In fairness to our BEAM friend, I must admit that one particular day, Rhema was off her game and did actually sleep for a few minutes. She was quite disgusted with herself when she woke up.
But back to this week’s sleep deprived EEG. I called the kind folks over at Children’s and explained that Rhema is quite used to being up all night and then going through a full day of school (including an hour long bus ride each way) and after-school therapy without so much as a yawn.
It would be better to do the standard 24- or 48- hour EEG in the hospital – this is what we usually do – because she will sleep at some point in that period of time.
But the epilepsy floor is currently filled and we’d have to wait several more weeks for a bed to free up.
“I understand. I’m just worried she won’t sleep for the EEG Tuesday morning.” I said.
“We’ll try our best,” the woman on the phone said.
So there it is. All-nighter tonight. EEG in the morn.
(We actually really need her to sleep during the EEG, so that her doctor can determine whether her anti-seizure med is still working. Ideally, those beautiful brown eyes will close once the 32nd electrode is glued to her scalp.)
Anyone wanna bet me a pizza?