John had his MRI in the morning. This wasn't one of those "open" MRI's. It was just a tube that his head would slide in to. Since this required him to be perfectly still, he had to get general anesthesia this time. The MRI took probably 30 minutes, and then they let us in to the little room to stay with him until he woke up. It took FOREVER for him to wake up. I began to really wonder if he was ever going to wake up. The nurse kept saying, "this is normal, he'll wake up any minute". When he was still out 20 minutes later, I think even she was beginning to get worried. Finally he opened his eyes, and within minutes seemed to be totally fine again.
The 24-hour video EEG was to start in the afternoon, so we had to switch rooms. After getting settled in the new smaller room, the nurse came in and glued the leads to his head. Since the leads need to stay on there for a day, they had to use strong glue and actually suction them on there. It took 30-40 minutes, which is a long time for a 1yr old to try to stay still. I'm still amazed at just how low-tech these EEG's are. The wires come from the head, down the back, and then over to a box, which is plugged in to the wall. So, John was basically plugged in to the wall with a relatively short cord. And, the video camera is only pointed at one spot. Any time John moved, (which was every couple of minutes), we had to go out to the main desk and tell them to reposition the camera. This is the 21st century! Why can't they have a wireless system, and a video camera that can follow the subject?
Every time we thought John had a seizure, we had to press a button. We weren't pros at reading his seizures yet, so we weren't always sure. Still, we were pressing the button an awful lot.
During the down time these first days, I contacted insurance and realized that this hospital was basically the only hospital in town that wasn't covered by my insurance, though they would still cover 70% after the first $2000. I called the hospital billing department, and they were very accomodating. They helped as much as they could, and assured me in the end that it would probably only cost my $1500- $2000 out of pocket. Money obviously wasn't important at that time, but it was still nice to know that I wouldn't be getting a $10000+ bill after all this. I also spent this time trying to research as much as I could about epilepsy. I learned that 80% of kids can get full control with meds and lead a normal life. Since I didn't know any better at the time, I assumed John would fall in to this 80%.
The rest of the day was spent trying to keep John occupied in this little room. Despite all his troubles, and the meds making him lethargic, he was still a 23 month old kid that wouldn't sit still for any time at all.
