I heard my cell phone ringing in my purse across the room. As usual, my heart began to beat a little faster. I caught the eye of the kindergarten teacher I assisted and she nodded for me to answer. We both knew what was next…it had become the routine. Eric’s teacher’s number was displayed and I answered as I began shutting down my work area, listening to her describe my son Eric’s most recent seizure.
To the Hospital — Again
Waving goodbye, I walked quickly to the school office and signed out, again this week. I called the neurologist’s office and, as usual, got the voice mailbox to leave a message. Then I phoned my husband. Thankfully the private school Eric attended was located at our church. I called the church administrator and asked if he could have a wheelchair available in case Eric was unable to walk.
By the time I arrived, it had been 20 minutes since I answered the phone. Eric was sitting limp at his desk. He was lying on the right side of his face, which was wet from drool, with his eyes fixed and dilated. His sweet, wonderful teacher told me the seizure started really slowly, and by the time she realized he was having a seizure to when it stopped was about three minutes. He had been lying this way for over 20 minutes without moving.
The neurology office called as we got Eric in the wheelchair and left a message that they returned my call. Gee, thanks. I called the neurologist office back as I was driving away from school with Eric laying in the backseat and, again, left a message. As I approached the intersection between going home or to the hospital, I paused wondering which way I should go today. Eric began to have another seizure. That question was answered.
The neurology office called as we were driving into the emergency area of the hospital. I explained, as thoroughly and briefly as possible, our situation. The nurse said I needed to bring him to the ER. Well, good, we’re here.
Eric was admitted to the Epilepsy Monitoring Unit, again.
We had learned to stay prepared during this time of our lives. After Eric was admitted, a phone call to his teacher confirmed school assignments would be needed for the remainder of the week. A phone call to the teacher I assisted confirmed she would need help from other kindergarten assistants for the week. A phone call to one assigned friend would start a chain of contact to others to let them know Eric was back in the hospital. Dad would go home after work, change clothes and gather the remaining items for the waiting, half-packed bag. He then would go to a drive-through hamburger place for our supper.
This had become our normal.
The hospital is part of the University, so residents were frequent. On good days their visits and questions were tolerable. On bad days I wanted them to shut up and get out and send someone with experience who KNEW what to do to help our son. I wanted these residents to learn and acquire experience but not at the expense of my child. If their attending physician had accompanied them it might not have been as frustrating. Usually the resident was truly interested in knowing how Eric was affected, but the one that would ask, “what is a mitochondrial disorder?” or, “how do you spell that?” would cancel out the ten residents who didn’t ask.
Suggestions for Hospital Survival
We learned to keep a written journal of who came by, why they came, what they hoped to learn, what was their designation in the medical field, and, definitely, what was said. There were always questions and we kept them written down so we could ask our neurologist (if he showed up).
We kept games, books, DVDs and audio books in our hospital bag because there is only so much TV you can watch before your brain begins to turn to jello. We kept our routine as close to normal as possible. We dressed every day and made sure to balance TV, books, games and quiet time. Eric had a sponge bath every night with fresh bottoms. The leads on his head prevented a fresh t-shirt and, because of sensory issues, he didn’t like button-up shirts.
Visitors were always welcome! That 10-minute visit really helped our day. I was always very aware and appreciative of the effort the visitors had put forth to take an hour of their day just to say hi.
The nurses were always our friends by the time we left. The extra time they would take to sit down and talk with Eric or me was so special and valued. They were the ones that encouraged our thoughts and decisions in the care of Eric. It was obvious which nurse really cared and enjoyed the job, and which one was collecting a paycheck.
The hospital experience is a necessary evil for families such as ours. We have since found a pediatric epileptologist, which has made a huge difference. Eric is admitted to the Epilepsy Monitoring Unity every 18 months or so now instead of weekly or monthly. The scheduled visits are easier to accept. Eric and I actually plan for it as if we’re going camping or on vacation. By the fourth or fifth day I’m long past done, but Eric’s had to endure so much more. Eric is our hero, our inspiration.