Tuesday, January 31, 2012
We got home from the hospital a couple of hours ago after a very long day. In short, there were some major technical difficulties that may limit what information we are able to get out of the EEG. Also, Allie had about 5 suspected seizures this morning and we are not sure if the EEG was working properly enough to capture them. Jonathan and I are both upset about the technology and staff failures and terrified about what her continued seizures mean for her.
The long version of this story starts with Tom (Jonathan's dad) and me checking Allie into the hospital at 10am yesterday. We got a nice private room and Allie got hooked up. She hated getting the EEG sensors put on her head, just like she has hated it the two times before, and she cried pretty hard during it. They wrapped her head and all the wires in gauze to keep her from pulling anything loose. Tom and I did our best to keep Allie entertained until Jonathan showed up after work, around 5pm. I took Tom home later in the night and went back to the hospital to spend the night with Jonathan and Allie.
Allie fell asleep around her usual 7:30pm and around 11pm we shut off all the lights and went to sleep. Nurses and technicians came in every couple hours throughout the night to check on Allie, make sure that all of her vital signs were OK, and check for problems with the EEG.
When Jonathan got up around 7am, he walked by the EEG machine and noticed an error notification. The EEG had crashed. Just then, Allie started waking up. We notified the nurses but it took them about a half hour to get the EEG re-running.
During this time, Allie had about 5 suspected seizures. Only the last two of these have any chance of being captured on the EEG.
Somebody came to talk to us a little later and apologize for the machine breaking. She scolded us for turning off the lights when we went to bed. She said that the EEG data that was recorded overnight may not tell us much because the accompanying video is not visible since we had turned off the lights. Why hadn't any of the people who had been coming in and out of our room said or done anything? Nobody ever said anything to us about turning off the lights. To be clear, there were still peripheral lights on in the room but apparently not enough for the video.
The main reasons that we wanted the overnight EEG were to see if she was having any issues while she was asleep and to see if they could capture the spasm behavior when she was first waking up. We now don't know if either of this information will be available. We are upset, to say the least. Allie went through a lot to get this and I hope that we are able to get some useful information out of it.
The neurologist is going to check in with us after she has had a chance to look over the EEG data. I will update more then.