Peter Pan at the Mayo

BACKGROUND: Rose had to go home-bound the last semester of her senior year in high school.  It was a hard call to make. She was very disappointed to not be going to school, but the seizures were frequent and strong. We felt it would not be safe for her or fair to the school.

After the “Knock-out Rose” seizure during February, which occurred in the school driveway during her horticulture class, her face was torn up pretty badly. Her brian and her face needed some time to heal. We all needed a new plan. The drugs she was on were clearly not working. The added stress and excitement of being a senior were adding to the triggers.

We went back to an Epilepsy Monitoring unit near home in May for ten days. We had hoped to get a SPECT scan to pinpoint the source of her seizure activities. We came home without results, which is another story. Because we had taken this step without gaining the needed information. We got a referral to a Mayo Clinic.

STORY: We were finally at the MAYO! We had brought ALL the notebooks of Rose’s medical history and ALL of her MRI films. I had read and highlighted what I thought were the major points in ALL her doctor and hospital records. We had studied her eighteen-year medical history like we were taking an exam on it.

We had compiled concise lists of her numerous drug combinations complete with the seizures and side-effects that resulted from each.  Her dad had made spread sheets. I had made charts. We knew we had to be able to have all her information at hand to quickly produce what was needed.  It had taken us months to prepare for this trip.

I have never been so impressed with a place in my life. It was a medical mecca!  If we were EVER going to get help, it would be here. Hopes were high. We had enjoyed the drive across several states. We had even stopped at a zoo and botanical garden on the way. We were in high spirits.

After the complicated, but efficient, check in process; we were interviewed by numerous neurology specialist BEFORE seeing the FAMOUS doctor that we had an appointment with. Rose was examined over an over… finger  to nose…walk a straight line…watch by finger…push down my arms… So many questions. The exertion and excitement made us stumble at times, but we felt they had a full picture of Rose’s history when we were done.

After all the preliminary exchanges of information, we checked into one of the hospitals. The room was large with a lot of light. We were relieved that is would be comfortable for our stay. It is hard not to  feel trapped in an EMU. You aren’t there for rest. You are there for results. That means that the more seizures that occur, the more data you will acquire as to their origin.

Rose’s dad and I had learned from experience at other EMU’s to tag-team these events. We took turns staying with Rose. It is a very stressful time. The patient is weaned off his/her medications as quickly as is safely possible to encourage seizure activity. Electrodes are glued to the scalp at precise locations to pick up the electrical activities of the different areas of the brain.

During a stay in EMU, the patient has a long ponytail of wires running to a receiver box which is worn in a harness. This is cumbersome. The patient cannot shower or wash their hair until the testing is over. The head is wrapped in gauze to protect the wires and hold them in position. If one electrode comes loose, it shows up on a monitor and a technician has to come and re-glue it in place.

Rose handled the inconvenience of a colorful, wire ponytail and harness like a champ. This wasn’t her first rodeo. She enjoyed her”spa treatment” with wires. She has always been a compliant patient, even when she was tiny. She did not mind missing showers either. Win, win.

We did hit a snag in compliance of safety rules when it came to a contraption we called “Peter Pan.” This was a safety harness on a track along the ceiling.  It had cables that came down from a dolly which rolled along a track that ran from the side of the bed, across the room and into a private bathroom. The harness reminded me of something one might wear on a Zip-line.

Because patients in the EMU are being weaned off their medications, they are a fall risk. It was expected that the harness be worn anytime the patient got out of bed. Rose was out of bed frequently. For the first several days we made it a game of being Peter Pan to go to the bathroom. She was helped into her harness/costume and she  semi-glided/flew into the bathroom. The harness then had to be removed to actually use the bathroom. Then the harness had to be put back on again to go/fly back across the room to get back in the bed. Now the flying part was enjoyable. She would pose as Peter Pan as I gave her a gentle nudge and sang the Peter Pan song.

By day two, all thrill was gone. Her dad and I were tired of buckling and unbuckling the harness. She was tired of getting it on and off. I was really tired of singing the perky Peter Pan song. We no longer loved Peter Pan. This was unfortunate because with each passing day, her risk of seizures had increased. We were now at high risk and hated the harness. I wished we had delayed playing Peter Pan until a few days in. The harness became an issue.

At other EMU’s there were places a child could go, with equipment in tow, to get out of the room and have a change of scenery. We could use trips to the “game room” as a bribe. Here, Rose had to stay in the same room, all day every day. She had read her magazines, watched her movies and played all the games we had packed. We still had days to go.  The harness just added frustration.

Finally,  we spoke with the nurse in charge and assured her that one of us would be with Rose at all times and keep a hold on her every second that she was out of the bed. This was nothing new. Holding on to Rose. It was actually a habit we had. Staying close to her, holding on to her. Fear of falling was nothing new.  Only the harness was new. As I said this wasn’t our “first rodeo” ,  but we were sure hoping it was our last.

SEIZURE MAMA

 

 

Author: Flower Roberts

I am a garden blogger and a mother. This blog is about my daughter Rose and her triumph over epilepsy. We are in the process of completing a book, Watching Rose Rise. We need folks who understand life with seizures to give us some feedback. Rose is off at college right now so I, Flower, am running the blog PLEASE come and join us. We want to get this right.

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