Wednesday, April 3, 2013

Chapter 31: Respite and a Decision with Unseen Consequences

Throughout the whole time Kayda had lived with us, getting overnight reliable, consistent respite was almost impossible. For the first few years we were lucky if we got 2 or 3 weekends free in a year.

Finally in early 1997 a new respite home for children with medical challenges opened in our area. It was run by the same organization that Dave worked for. Even though it was against the policy of the Associate Family program to have children cared for in group care situations it was decided that Kayda could go to this home.

Her first weekend there was the weekend before her casts came off. In her usual fashion, she came down with a cold the morning of the day she was to go to respite. After numerous conversations with the nurse in charge it was decided she could still come. Precautions always had to be taken as 2 children were cared for at a time in this home. Once Kayda was dropped off and settled in Dave & went away for the weekend. We rented a condo in the town near where he had a season pass for skiing. On Saturday Dave went skiing and I stayed in the condo and just relaxed. There were no phones in the condo so I had to walk a fair distance to a pay phone to check on Kayda. She was definitely sick but seemed to be doing ok.

On Sunday morning we checked out and I went to the ski hill with Dave. I just sat in the lodge and read and did cross stitch. After awhile I noticed Dave coming in to the lodge. He didn’t look good. It turns out that he was hit by a snow boarder going way too fast. He had been examined by the ski patrol and had rib tenderness and a sore wrist. They didn’t think anything was broken but suggested he get checked out by a Dr when we got home. When I’d phoned to see how Kayda was doing that morning they told me that she had a fever and seemed to be having a lot of trouble breathing. From that information, I figured that we would likely be taking off to the hospital as soon as we got home.

Despite his sore wrist and ribs Dave drove home. We were in our old van which had no power steering so driving wasn’t easy. Our other van was having trouble with the starter. Pick up time at the respite home was 3 pm. We didn’t get home until well after 4. I was very conscious of the fact that the people at the respite home worked with Dave and felt bad about being late. Dave felt he needed to go to the hospital so I took the old van while he tried to get the other one started. Before we’d gone away I’d arranged to have a respite person come in on the Sunday evening. Before dashing off to get Kayda I gave her a list of things to pack as I was still sure we’d have to take her to the hospital that evening. I felt bad about Dave being injured but really felt that Kayda was my priority. I learned later that this simple decision had far reaching consequences.
It turned out that Kayda really wasn’t doing too badly. She always sounded much sicker than she actually was. Having the oxymeter made a real difference. I could see that although her oxygen level was a bit low she was above her lowest limits. Dave’s wrist and ribs were just bruised not broken.

The next day, as planned we went back to the hospital to have Kayda’s casts removed. Because her physio had gone so much better with her in hospital the last time, it was decided to do the same. Again she did much better having her initial physio at the hospital with the nice big bathtub.

Chest xrays and tests all showed that Kayda’s lungs were fine and that she just had a cold and upper airway congestion. On that visit we had a real “gem” of a student nurse assigned to us. As this was a teaching hospital and Kayda and her needs were thought to be rare we were always assigned students. This student actually argued with our Family Dr about Kayda’s condition. The student was sure Kayda was gravely ill and her lungs were badly congested even though the Dr said that no, it was just upper airway noise. The student felt that deep suctioning was needed to clear Kayda’s airway. I asked her if she’d ever suctioned nasally before. She said no, but that she needed to practice. “You’ll practice on someone else” I said. That was often an issue when Kayda was in the hospital. The only effective way to suction her was nasally but I found that even the RNs didn’t do it gently or effectively enough (for me anyways) so I usually did it myself. There was one physiotherapist that was good at deep suctioning. I always stayed with her in hospital and that was one of the things I insisted on; that I or a trained caregiver do any suctioning.

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