Major Pediatric Therapy Place was designed for kids like Dear Son. His favorite of the three services: physical, occupational and speech, was always physical therapy. Of the three therapists, he always had a ready smile for the physical therapist, because he knew they would work on walking. She would try to work on trunk control or other areas that he would need to walk, but Dear Son would have no part of it. He’d refuse to cooperate until she worked on just the walking. He was so proud.
Dear Son was a sweet young man. He was only three when he started school. His first classroom consisted of six young girls, himself and another boy. The girls were all enamored with Dear Son so much that the teacher nicknamed them, “Dear Son’s Harem”. Dear Son loved being with other kids and people liked him. It didn’t matter that he couldn’t speak, because he could get his needs across in other ways, like gazing at an item or smiling. Those worked just fine.
Different times when he was sick, I wished he could talk. It was hard not knowing was what wrong. For the most part, I learned to figure most everything out. I could tell when he was hungry, when he was full and when something was wrong. But still, talking would be great. I longed to hear his voice since I didn’t know what it sounded like. And to hear “Mama”, well that would be the icing on the cake. It was many years before I’d hear it for the first time and then many years before I heard it again.
When Dear Son was ten, I found a daycare center for him. At the daycare center, he blended in easily. Even though he could not walk or talk, the kids loved him. He’d sit outside in the dirt hole and play until I got there. One day, I mentioned to him that I bet the kids would be impressed if they seen him walk in his gait trainer. His face lit up and then he bowed his head down and licked my hand. That was how he gave me a kiss. Whenever I said something that he was thinking, he would kiss me as if to say thanks. The gait trainer was normally left at school, since it was so large; as a result, he could only use it there and never at home. We took it to the daycare center and I strapped him in. He stood up straight and practically ran in the gait trainer to show the other kids that he too could walk. Most of the kids were younger, say two to six years old and were not impressed, but Dear Son was so proud. It was like he was a new man. At that time, I wished he could walk.
Another time, I came to pick him up at the daycare center around Christmas time. It was almost six o’clock and I had rushed to get there on time, so I would not be penalized. A little boy grabbed my hand and told me he had a dream about Dear Son. I knelt down so I could see his face when he talked to me. He told me that in his dream, he was standing in line to see Santa when he saw Dear Son. He said that Dear Son could walk. I was caught off guard by the little boy and his dream. To think that Dear Son’s walking was on this little boy’s mind so much that he would dream about Dear Son, was special. Upon completing the story to me, the little boy said, “I wish Dear Son could walk.” “I do too,” I said.
But a few weeks back, he went in for extended EEG monitoring. The EEG was very active despite the fact that Dear Son didn’t show any real outward movements, that might indicate a seizure. The Attending Physician was quick to point out that Dear Son had no seizures despite the activity on the EEG. In fact, he didn’t mention the EEG at all. He simply said that there weren’t any seizures. Dear Son’s Ped Neuro Doc, who also read the EEG, said the EEG was very active. He felt that he should treat Dear Son and elected to increase his Vagus Nerve Stimulator (VNS). The VNS would be increased to the “rapid cycling” mode to combat this electrical activity. I felt relieved that Dear Son wouldn’t suffer and hoped the new speed would help.
As Dear Son matured, he no longer shakes as much during a seizure, instead he cries or yells out, getting louder and louder until finally a tear rolls down his cheek. This didn’t happen during the testing, but the fact that it does happen tells me that Dear Son does feel some pain. On the third day, he was released from Big Academic Medical Center. I was told that someone was coming to check the VNS, to make sure it the new settings were accurate but no one ever did. I felt uneasy leaving the hospital, since the nurse who changed the speed on his VNS, was not our regular nurse. In addition, she seemed to change the settings differently, from the way our current nurse did it, and that didn’t help. I was very uncomfortable.
Upon arriving home, I did a bit more research. I was puzzled by the sudden discrepancy in the definition of a seizure. I learned that unless the patient shows physical signs of a seizure, it’s not defined as such, regardless of the EEG. Knowing that, helped me better understand the difference between the two physicians. I was a little peeved to think that the other Attending Physician would not have treated Dear Son given the circumstances. I mean, if the EEG is very active, then I would imagine Dear Son would feel this, regardless of whether or not he showed outward signs. But not being able to ask him, well, then, it was just a guess.
The internet, provided more information on the VNS and rapid cycling. It wasn’t until I read some of the comments under the discussion sections, that I became really uncomfortable with the VNS. Some people who had the VNS implanted, described tiny shocks, like bee stings, over and over again, from the device malfunctioning. In one case, when a woman complained to their physician, he checked the device, determined it was fine and sent her home. When she continued to complain, he ignored her and soon, neither the physician nor the manufacturer, would listen to her. In other cases, the shocks were so bad that they taped the magnet* to their chest. Others wrote in that when they upgraded to the new model, they had issues with the device malfunctioning. I soon became sick to my stomach. Rapid cycling, involves a seven second shock** and then the device is off for thirty seconds, then shocks the patient again. When the thought that the device could malfunction and hurt Dear Son, I felt sick to my stomach. I mean, if the new rapid cycling, was hurting him, giving him shocks, I’d never know. Our next office visit wasn’t for another two months.
As Dear Son lay in his bed that night, he’d squirm different times and get this funny look on his face, and I would wonder if it was hurting him. I tried to talk to him about it, in a positive way, and told him that they increased his device to help get rid of the seizures. I asked him how he felt but I couldn’t ascertain anything.
It was then that I had my answer. I knew that I wished he could talk. In all of the years I wondered, which life skill would be more important, I knew I had my answer. While walking made him feel good, the thought that he might be in pain or even “shocked” by the device, seemed horrific to me. Some time later, my rational brain kicked in, and I reminded myself that the VNS he had, had worked well for him and the incident of malfunctioning was small and ….