During his hospitalization he wasn’t eating anything by mouth, but I knew that if he didn’t start soon, we would be forced to stay longer in Portland. I encouraged Wayne to drink water, so that he would learn to swallow without aspirating. He tried and tried, and finally he could drink a whole glass of water. Then I started urging him to eat food. It wasn’t long before he was eating almost everything. I wanted the gastronomy tube (G tube) that had been surgically implanted in his stomach removed as quickly as possible, because it was often infected. As much as I cleaned it and bandaged it, infection oozed out of the hole in his abdomen. He was taking antibiotics, but he kept pulling on his tube or playing with it when he was agitated and that kept it irritated. However, we had to wait until he could swallow his pills.
The doctor was about to release Wayne to me when he had a grand mal seizure. It was an experience I’ll never forget. I was holding his hand so that the nurse could clean out the IV in his neck when it hit. He pursed his lips tightly, his face turned deep red, then every muscle in his body contracted, and he folded into a fetal position, his muscles remaining tight for about eight seconds. His eyes rolled back into his head and he lost consciousness. They gave him two hundred milligrams of Phenobarbital, then two hundred more in a few hours. He was given Phenobarbital twice a day to control the seizures, from then on. This was a nasty medicine. The side effects were bad, but---no seizures.
Five days later, Wayne was released to me. We lived in the apartment and I cared for him myself. Of course, it wasn’t easy to give him twenty-four-hour care. I kept him in restraints at night and took him back to the hospital in his wheelchair, for physical therapy three times a week and to dialysis three times a week. My days were filled with giving the medications on time, bathing him in bed, changing his colostomy or just emptying it, feeding him through the G tube in his stomach---all the while keeping everything as sterile as possible. Since there was a lot of laundry involved it was a good thing that the apartment had laundry facilities.
There were terrible nights when he fought his restraints like a caged animal. Then his eyes fill with fear and he rattled the bars on his bed railing, straining to get out of bed, picking at things in the air that weren’t there. Sometimes he hallucinated about men who were trying to steal something from him. He would roll up his covers in a ball and either clutch them to his chest like a child with a teddy bear, or try to throw them across the room. He couldn’t stay still; the man was like a nest of ants, always moving. All the while he breathed the deep, heavy breaths of someone terrified, or in a deep sleep. It was those night that drove me crazy. I didn’t know whether to laugh or cry. Sometimes I did both.
When I asked the doctor about the heavy breathing, he said it could be caused by acidosis. Sometimes deep breathing, over an extended period of time, can lead to hyperventilation, which in turn can trigger a seizure. On those night when he was agitated, I gave him two milligrams of Haldol through his G tube, which should have calmed him down, but I might as well have given him a glass of water. It did about as much good.
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