Wow! So much has happened in the last week it seems like it’s been a month!
As you already know, I was admitted to the hospital for observation because the seizures/events were more than my parents could handle at home. Since the 24 hour EEG showed nothing, the neurologists decided that the seizures were stress related or faked. So they set out to prove it.
They planned to give me their conclusion on Friday and the nurse told us they also planned to discharge me. My mom was worried about this since we had no way to really control the seizures and we knew if I was discharged, I’d end up right back in the ER. So Dad came up early Friday morning so he’d be there when they came. My dad is very diplomatic and can handle delicate situations well.
We felt I really needed to stay until something was figured out. My Lyme specialist told me he felt there was some underlying issue that was hindering my recovery and advised me to get as much testing as possible.
Dad spoke with a customer of his, who is a doctor, and she advised him on how to handle the situation.
The Nurse Practitioner and her sidekick entered the room about 11:00 AM. Joe showed up about the same time and so he was there for the consultation.
Dad calmly listened to their plan, which was to simply discharge me, then asked what we were to do when the next “events” took place. Should we come in by way of the ER, or would there be a better way to avoid the cost of another ER visit? He also mentioned the fact that they were not managing my pain very well. He asked if we could at least stay until the episodes subsided and had some way to manage them at home to avoid readmission. They said that decision would be up to a superior but thought we could probably stay. So we waited for a definite decision to come back.
Soon after they left I got up and walked a bit, which is quite an event in itself, (my neck and back jerk backward when I walk). This triggered a seizure and Dad went for the nurse. They usually give me an anti-seizure med through IV which, if given in a high enough dosage will stop the convulsions after a bit. I can feel what meds are put through my port. The anti-seizure meds have a certain smell and feeling in my head. It also makes me cough and comes in a small syringe. When the nurse gave me the IV, I didn’t get that feeling and it didn’t calm the seizure.
The nurse summoned the Nurse Practitioner who came in to observe for a few minutes and then left. My body arched backward in a painful spasm.
The nurses hovered around me, “Breathe deeply,” they coached. “Just calm down.”
“Try to think of nice things,” one nurse said softly. “Think of a nice, breezy day with water and palm trees.”
Needless to say, it didn’t work.
This went on for two hours. On a scale of one to ten, I think my pain level hit fifteen. I soon realized this was an experiment and knew I would have to just deal with it in order for the neurologists to understand.
My boyfriend, Joe, was there and finally he couldn’t stand it any longer! “You want to see a fake seizure?” he asked the nurse. “I’ll get on the floor and show you a fake seizure!” There’s a loyalty in that man to be admired.
I finally hit my breaking point. “Dad!” I gasped, “I can’t do this anymore!”
“I’m sorry, Andrea,” he said. “I can’t do anything about it.”
My regular nurse, who was trying to calm me earlier, had realized by this time that I really wasn’t faking this. “I’m going to go try to get them to do something!” she told dad.
They allowed her to give me some medication, which I felt in my head and coughed as it entered my blood stream. My body eventually began to relax somewhat, but I was still curled. As they straighten me out it was all I could do not to scream with the pain of it. I was no longer convulsing but my body stayed rigid and jerked.
Dad decided it was time to do something about my pain levels. He and mom went to talk with the nurse and she said, “Let me just go get the doctor.” And so it happened that the nurse practitioner and a neurologist entered my room and the neurologist actually observed my movements herself rather than just getting reports from the nurses and looking over an EEG. They realized that something really was going on and began to try to figure out what to do. The neurologist decided to email a video clip to their movement disorder specialist who was on vacation, and ask her what she thought they should do with me.
Wouldn’t you know, the movement disorder specialist was, at that very moment, in the hospital parking lot about to leave from a meeting she had attended. When she received the text message, she decided to just head on up to the 2nd floor and see for herself.
After observing me and a home video of a seizure we had with us, she concluded that there was an issue. “When you move forward it’s you relieving the tension, but when you jerk backward, that’s not you!” she declared.
It was an amazing feeling to be believed.
She left to review my records and when she returned she had a tentative plan of action and a possible diagnosis.
They are currently experimenting with medications and in the last 36 hours I’ve only had one, mild ten minute seizure. My walking still remains unstable. I cannot walk on my own without falling. They’ve recommended a walker for me. Anyone know of a small, black and white polka-dotted walker? I’m not real into a grandma one! *grin*
They plan to discharge me tomorrow, Monday, and I will follow up with Dr. W, the movement disorder specialist. She seems to see me as a challenge and I look forward to working with her.
After Dr. W. saw me. The first neurologist, the one who had examined me in the ER, came to my room. “We thought it was stress related or something,” he told me. “We’ve never seen anything like it. There was nothing like this in the books or on any of our tests.”
The past week has seemed so chaotic and out of control. But as I look back over the events that took place I’m amazed to see how God so carefully orchestrated the timing. Most of my episodes are night time events and on Friday I had one in the middle of the day, while the neurologist on call was able to observe it. The text from the neurologist caught Dr. W. just as she was about to leave the hospital, and she took the time to come help me. I feel there are a lot of hurdles to cross yet, but if God could time things so perfectly then why not trust Him with the future?