We are still at the hospital. I am getting ready to go to sleep after being up all night with Jess. It wasn't too bad because I slept all of yesterday with a migraine.
They told us it was very rare for anyone to stay the whole 5 days. We go home tomorrow. Of course we are the rarity. Jess has had one time when her legs spasmed and pulled up tight and she had to force them to straighten. I made her wait until the doctor on call saw what they were doing. doctor on call seemed very young but said it was the "freakiest" thing she had ever seen.
That was NOT reassuring.
The wires and the hat holding them on came loose yesterday. The eeg tech on duty tried to chew us out for it. I ahve no patience for that. Jess did NOTHING wrong. Tech said that it all happened because J pushed the chin strap off her chin. Gee, it left deep red marks on her face so she ASKED the nurse if she could. Jess even waited until the nurse came back after asking the doctor if it was okay. Then tech got mad because J was sleeping with covers on. Wanted to gripe at me because she was sure I "knew better" and was keeping the room cold for MY comfort. Hah! She was informed, rather curtly, that hte temp was ALL up to Jess and I had not even touched it. She was also told that she could be grumpy elsewhere but we would NOT be treated rudely. I suggested that maybe these rules, like no covers etc.... be written down because the tech who put the wires on and started the eeg said NOTHING at all about this.
Jess is trying hard to not sleep, hoping that it will trigger something. It is hard iwth nothing to do but stay in a room for a week. Other than a really strange period about 4 am where she was pacing, walking nonstop, could NOT sit still or even walk with-o having her arms moving around not flapping but wiggling and fidgeting, we have had NOTHING that I can pinpoint. I am betting that with-in 12 hrs of going home she freezes and her whole body freaks out. Which will drive me nuts. I swear she is a toaster. They NEVER have problems when the repair person is looking at them!!!
This will sound strange, but PLEASE send board mojo and prayers that she has the all body spasms, her head pulls to the side and all muscles pull her body in odd ways, and that she also, separately, has at least one freezing spell. ALL before we go home tomorrow.
I really did NOT want to start neurontin 3 weeks before this test. But the doctor insisted, and it seems to be taking care of the absence seizures. So the doctor isn't seeing them, sigh.
Thanks.
They told us it was very rare for anyone to stay the whole 5 days. We go home tomorrow. Of course we are the rarity. Jess has had one time when her legs spasmed and pulled up tight and she had to force them to straighten. I made her wait until the doctor on call saw what they were doing. doctor on call seemed very young but said it was the "freakiest" thing she had ever seen.
That was NOT reassuring.
The wires and the hat holding them on came loose yesterday. The eeg tech on duty tried to chew us out for it. I ahve no patience for that. Jess did NOTHING wrong. Tech said that it all happened because J pushed the chin strap off her chin. Gee, it left deep red marks on her face so she ASKED the nurse if she could. Jess even waited until the nurse came back after asking the doctor if it was okay. Then tech got mad because J was sleeping with covers on. Wanted to gripe at me because she was sure I "knew better" and was keeping the room cold for MY comfort. Hah! She was informed, rather curtly, that hte temp was ALL up to Jess and I had not even touched it. She was also told that she could be grumpy elsewhere but we would NOT be treated rudely. I suggested that maybe these rules, like no covers etc.... be written down because the tech who put the wires on and started the eeg said NOTHING at all about this.
Jess is trying hard to not sleep, hoping that it will trigger something. It is hard iwth nothing to do but stay in a room for a week. Other than a really strange period about 4 am where she was pacing, walking nonstop, could NOT sit still or even walk with-o having her arms moving around not flapping but wiggling and fidgeting, we have had NOTHING that I can pinpoint. I am betting that with-in 12 hrs of going home she freezes and her whole body freaks out. Which will drive me nuts. I swear she is a toaster. They NEVER have problems when the repair person is looking at them!!!
This will sound strange, but PLEASE send board mojo and prayers that she has the all body spasms, her head pulls to the side and all muscles pull her body in odd ways, and that she also, separately, has at least one freezing spell. ALL before we go home tomorrow.
I really did NOT want to start neurontin 3 weeks before this test. But the doctor insisted, and it seems to be taking care of the absence seizures. So the doctor isn't seeing them, sigh.
Thanks.