Chapter 9: Illness

Over the course of the winter Dave, Kayda and I had gone for a number of weekend trips to various ski hills in the area. Dave skied and Kayda and I enjoyed wandering around different towns and villages. I also enjoyed the break from the regular routines. In mid February we went to a ski area fairly far away from our home. On our second or third night, we had gone to bed early. All of a sudden I woke up hearing Dave saying something unmentionable. He ran to the door just in time to see our van being driven away. It had Kayda’s tie downs, ramps, Dave’s ski equipment and a very expensive special ski for the disabled in it. We quickly learned that that area didn’t have 911. Dave ran to the office of the motel and called the police. We were very fortunate that the person who stole the van wasn’t very smart. He drove it in to town instead of heading out of the town along the highway. He was caught within 15 minutes. The only thing we lost was Kayda’s parking pass. Oh, yes, we had to buy a Club as the van could now be started with just about anything. That really spoiled our weekend. Dave did manage to take Kayda on one run in the sitski-a special ski. Dave had worked for several years teaching people with disabilities to ski. That was Kayda’s only time in a ski. He said she enjoyed it. I stayed inside enjoying my only break from her care in a long time. A few days after we got back, I woke up feeling horrible. I ached all over and felt really weak. I noticed I was short of breath just pushing Kayda’s empty chair down the hall. Every time I took a deep breath my back hurt. I thought that was ridiculous so ignored it. I figured I had the flu. Kayda chose that day to wake up with a very high temperature. She did that from time to time and each time I took off to the Dr with her to get it checked out and each time there was nothing wrong. This time was no different. By this time we’d found a really nice family doctor (actually 2 as they shared the practice) a couple of towns away from us. They were in the same building as the pediatrician we were seeing and worked out of the same hospital. After the doctors appointment we went home and Kayda seemed fine. Her temp was down and she was her usual happy self. I felt horrible. Dave was away for the weekend skiing. The next morning I woke up feeling worse and had a high temperature. I never get fevers or felt as bad as I did. Once again I assumed I had the flu. That day I was training new respite caregivers in how to care for Kayda so I asked them to do most of the work so I didn’t have to get close to her and risk her getting my bug. I spent most of the day lying on the couch while the respite people were there or on a mattress on the floor next to Kayda’s side lyer when no one was around. She was an absolute angel and was happy lying there holding my hand. I slept most of the time. In the late afternoon Dave called and I told him how sick I was. He asked me if I wanted him to come home and I said yes. As soon as he got there I went to bed. Monday morning I woke up knowing there was no way I could care for Kayda while Dave was at work. My head hurt every time I moved it, I had a high temperature, I ached all over, etc. So, I phoned the social worker. She arranged for Kayda to go to another home for a couple of days. The next day she called and said it just wasn’t working out. Miss Kayda had hollered all night and not slept and had bothered the other child in the home. I just laughed at that as I realized she knew she wasn’t the queen in that house. So, she came home and it was arranged that we’d have nurses come in to care for her. After several Doctor appointments and emergency room visits it was decided that I had an extremely severe kidney infection. I was put on iv antibiotics which meant driving to the emergency room at 5 am each day for several days as that was the only time that was quiet enough for the staff to have time. There were several others that came in at the same time. With having the nurses at home I was able to avoid a 2nd trip to the hospital each day to have the saline lock flushed. They just did it for me. I was flat on my back for a full month. During that time we had some really wonderful people come in to care for Kayda. While I was still very sick, she came down with bronchitis. We ended up in the local emergency room by ambulance very early one morning-Dave had left the night before to go to a sports competition with the disabled skiers in another part of our province. The doctor who saw Kayda was one I had had and stopped seeing because he was making major errors in my care (He prescribed a medication for Parkinsons when he meant to prescribe a medication for migraines and didn’t tell me this until a month later when I saw him for something else. Fortunately I hadn’t taken the med as it was too expensive and I wasn’t convinced it was necessary). He wanted to admit her and I said no. I was too sick myself to do the amount of care I knew would be needed from me if she was in the hospital. The nursing agency arranged to have nurses on for 24 hrs a day at home. I really didn’t trust what the doctor in the Emergency Room had said about Kayda so that afternoon I took her to see her family doctor (she was mine by then as well). She confirmed the diagnosis of Bronchitis but found he’d prescribed the wrong dose of antibiotic. Kayda recovered after a few days. That was a nightmarish time but with the help of the social workers and nurses we managed. This all started at the end of February and it was the end of May before I was able to care for Kayda by myself. Something else that we were dealing with at this time was sleep, or the lack thereof. The first little while after Kayda came to live with us she slept fine. This was probably because she was so doped up on anticonvulsants. By December this was no longer so. Most of the time she only slept every 2nd or 3rd night. When awake, both at night and the day after she screamed and giggled hysterically. This was also the time she was most active with lots of kicking and wiggling. She got into this pattern of constantly wiggling her legs, so much that the chair or sidelyer would squeak. At the beginning of December I contacted the pediatrician and asked for some help with her sleeping habits. He recommended our trying Melatonin as that treated the cause of insomnia rather than just the effect. The theory of melatonin is; Our bodies excrete the hormone melatonin in response to eyes’ perception of the day getting darker. That’s why people tend to sleep more in winter and on dreary days. People who are blind don’t get this same stimulus. At that time Melatonin was only available in Canada as part of a research study. It turned out that the Neurologist who was leading the research into using Melatonin to help children with multiple disabilities sleep, worked out of our local Children’s Hospital. Kayda saw him in March and he agreed that she was an ideal candidate for Melatonin. We started giving it to her with high hopes. After 2 nights it was clear that it wasn’t working so the Dr told us to increase the dose. After several months and on a dose of 15 mg (1 mg over sedates me) we had to admit that Melatonin wasn’t the miracle we had hoped for. We tried it again a couple of years later with the same results. The doctor said that their research was indicating that Melatonin is processed by the hypothalamus and seemed to work for everyone whose hypothalamus was intact. It appears that Kayda’s wasn’t or it wasn’t functioning well. To this date, I haven’t heard of Melatonin being effective for any child with Hydranencephaly. Each family tries it though just in case. So, without Melatonin we had to go back to treating the effect of sleeplessness, which meant trying sedatives. We started with Chloral Hydrate. That was scary. Even half the prescribed dose sedated her so much that I couldn’t tell if she was breathing and couldn’t rouse her. Then she would scream the first half of the next day. That wasn’t worth it. Finally we went back to giving her Nitrazepam to help her sleep as we knew that it had had that effect when she was on it as an anticonvulsant. There were problems with it eventually because she became accustomed to it and needed an increasing dose but in the short run it was wonderful-most of the time. She still had spells of only sleeping every 2nd or 3rd night and screaming in between. I got so tense during these times.