We were sitting in the doctor’s office discussing the future treatment plans, when I noticed the telltale signs of a seizure. And for once I was almost glad. We were seeking help from a professional, why not just have a show and tell? Doctor R. gave her IV Ativan in his office and the seizure subsided.
Having a seizure in his office was just the push we needed to go on to the hospital. It was getting to be more then we could handle ourselves. Racing to the emergency room during a seizure is hard on Andrea’s body; it’s hard on us as her parents to make decisions under that kind of pressure.
We still had to go through the emergency room to be admitted.
The waiting room was full. There were so many people in huge wheel chairs, it was hard to maneuver Andrea’s wheelchair around. There seemed to be a lot of distress in that room and I wondered about the story behind each person. An older couple stopped and asked for Andrea’s name. Then the man kindly said, “We’ll pray for her tonight”.
After getting a treatment room, Andrea went into another very hard seizure. There were two nurses with us first and they acted very alarmed and freely admitted they had never seen anything like it. Dr M. the ER doctor entered the room mouth first. He called her name loudly and when she acknowledged him he turned to us and wanted to debate the validity of the seizure. He directly accused her of faking the seizure all the while Andrea was painfully seizing on the bed in front of us. It broke her heart to hear him talk like this. When the doctor left our room and Titus followed him out to the hall and asked him if he could please show a little more kindness to her. He came back in, apologized, and treated her better after that.
We learned quickly that it is best to call them “events” since they defy the rules of a real seizure. It doesn’t really matter to us what they are called. We are here because we need help.
The nurses obviously believed she was NOT faking anything. They were horrified at the way her body was twisting and worked efficiently to bring relief. Their kindness was touching.
One nurse seemed especially affected by the event. When going off duty, she came to tell us good bye and made the comment she hopes she never sees anything like that again.
We ended up spending the night down in the ER because there wasn’t a room available upstairs. So we were still there when she came on duty this morning.
“I know we’re cool!” She exclaimed after finding us still there, “But we aren’t that cool! You should be in a private room.” She told Andrea she went home and dreamt about her last night. She said she doesn’t normally dream about her patients.
The neurologist stopped by late last night. A nice sort of guy. He ordered a 24 hour EEG which is in progress now, in our private room. =) The EEG has sound and video so we are being watched 24/7. It’s a little something to get used to. She is connected to about 27 wires and pretty much confined to her bed. We are torn between hoping for a seizure so they can get what they need and the wires can take their leave, and yet dreading the thought of another painful “event”.