Wednesday, April 3, 2013

Chapter 28: Fall, Casts off and the Government

After trying to get a hold of the social worker all summer without any success, it was September and time for Kayda’s casts to come off. Because no physio had been set up for her at home, the surgeon decided that Kayda should be admitted to the hospital for 5 days after the casts were off for physio. This simple act caused months of illness and hardship for my poor girl.

Over all, admitting her to hospital when the casts came off was a good move. This time, I knew the pain she’d face as soon as the casts were lifted off of her legs and had given Tylenol ahead of time. I also knew to hold her legs down and keep them straight. The surgeon whipped her legs around to check her range of motion which clearly hurt but other than that, this time around wasn’t nearly as bad as the first. And, all I had to do was wheel her chair to the elevator and then to her room rather than taking her on a long bumpy drive. Once again, though, Kayda was placed in the “Nursery”. This time there were 4 or 5 babies in there, all with viral pneumonia. You know what one year olds are like; there’s no keeping them in their own areas. The children on either side of Kayda had pneumonia. The other thing that hung over that stay in hospital was that the surgeon had told me that her right hip was now dislocated. Snipping the muscles at the top of her legs in the first surgery hadn’t been enough to keep it in place. So, she would have to have the other hip reconstructed too. The surgeon wanted it done as soon as possible. He gave me the surgery consent form to give to the social worker; yes the same social worker who didn’t return calls all summer.

We started her physio the day after the casts came off. We learned that she did much better with her range of motion exercises in a warm bath. As her legs were very tender and she was nervous about having them moved we decided that she’d be better off just in a large bathtub rather than the hydrotherapy pool in the hospital. We would be able to control the waves that way. She did so much better in the warm water. We took her into the tub twice every day. Because the surgeon was still worried about her left hip, he asked that her old Scottish Rite brace be extended on the left side to include her AFO. So, basically she ended up in the same position as she was in casts. This became like a removable cast. Gee I hated that thing. But at least she could bend at the knee so could sit in a regular wheelchair again although the seat had to be extra wide as her legs were still abducted. Once again, I knew I would be kept busy making extra wide skirts for her to wear.

Her casts came off on a Monday. The new brace and the adaptations to her chair were done by Sunday. So, we went home Sunday afternoon. Sunday night she sneezed twice. “Oh no” I said. Sure enough, by the time I got up in the morning Kayda was very sick. At that time we didn’t have the oxymeter at home so I was just guessing how she was doing. I did my usual “do I panic yet?” routine all morning. The physio that had finally been arranged to come to the house to do her post op remobilization therapy came at noon. By that time Kayda was in bad shape and I was busy stuffing clothes and equipment into bags in preparation to leave for the hospital. Her legs had been so sore that morning that I didn’t even put pants on her. I just put on a long shirt and her diaper under her brace. The physio looked at her and was really concerned. It turned out that she had been the physio for a couple of the children I’d cared for when I did in home support care before I had Kayda. It was always nice seeing old trusted friends.

Kayda rallied a bit in the afternoon so we stayed home. But, by 5 I had given her ventolin several times and it just wasn’t working so I called the ambulance. By 11 that night she was wheeled back onto the same floor she’d been discharged from 30 hrs earlier. And, yes, she had viral pneumonia. That one bout of pneumonia weakened her immune system enough that she had one illness after another all Fall. We got the oxymeter and found that even when she sounded bad her oxygen level was ok so she stayed home most of the time. But, what that meant is that ALL of her care was my responsibility. The Doctors wanted her to have Ventolin by nebulizer every 4 hours around the clock as well as Pulmicort 4 times a day by nebulizer and 2 hours of chest physio daily. I think I went 6 weeks without sleeping more than 3 hours at a time.

Throughout the Fall and through all Kayda’s illnesses we kept trying to get a hold of the social worker to sign the consent for Kayda’s hip surgery without success. Our service coordinator had her supervisor go to the legal guardian’s supervisor even and still we couldn’t contact her. Finally, in November I went to a workshop that the legal guardian also attended. I ended up taking Kayda too as I really wanted to attend the workshop and couldn’t find a sitter. So, as soon as I saw “B” (legal guardian) I whipped out the consent and gave it to her and stood next to her until she signed it. Then I tucked it carefully away.

By the time the Christmas holidays came around Kayda had been at school just 9 days. In September, as recommended by the inclusion team the previous spring she’d been placed in a grade 3 class. Early in December the principal phoned me. He started explaining that due to class sizes and teachers contracts and such, he would like to move Kayda and her aide back into a grade 2 class after Christmas. Would it be all right with me? He asked. “Would she be with her friends from grade 1?” I asked. “Yes” he said. Of course I gave my consent. Once again this principal showed that he knew how to do what was best for the school and for individual students rather than what outsiders thought was best. We never discussed the fact that Kayda was a year behind age wise again.

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