Friday, March 15, 2013

Chapter 6: Breathing and Our First Holiday

Over the next few weeks Kayda’s breathing deteriorated. She was always wheezy and congested. I wasn’t suctioning much because I never got anything when I did. Several times when we were out, or a nurse came to the house and heard Kayda’s breathing we were told to take her to the Doctor or hospital. Of f we’d go and wait. Each time, by the time a Doctor saw her she was fine. I just couldn’t figure it out. I started thinking about it and realized that each time the Dr saw her she was lying down. So, I experimented at home, and sure enough her breathing was great when lying down on her side with her head elevated. The minute I put her on her back or sat her up she started to gurgle and wheeze again. I decided to keep her lying down, including when she was being fed. I got a lot of opposition to that but reasoned that when tube fed people are fed at night they aren’t gotten out of bed and sat up. I was very careful that she was on her right side with her upper body elevated. Because of repeated trips to the ER with breathing problems it was decided by our Family Doctor to refer Kayda to be seen by a respirologist at the children’s hospital. When we saw him, of course Kayda was sitting in her wheelchair and had been for several hours so she was gurgly. He looked at the chest xrays that had been taken over the last few weeks and proceeded to show me his interpretation of them. It turned out that they had all been misread and the xray I’d been told was fine actually revealed that she was very sick. My trust in our local hospital continued to decline. The respirologist repeated the same thing I’d heard from several other Doctors; she would die soon and there would be no attempts to save her or prolong her life. At that time it sort of made sense. Basically the result of the appointment with the respirologist was take her home and wait for her to die. He did agree that we could take her on a holiday the next week. We made plans to visit my grandmother in the interior of the province we lived in. She’d been with us about a month at the time. During this time Kayda was starting to be more responsive. I’d take her out shopping and she’d be stony faced the whole time. The minute we were home she’d start smiling and laughing. She still didn’t like to be held or move at all. The trip to my grandmothers’ took most of a day. We arrived around dinnertime and Kayda was totally stony faced with no reactions at all. By the way no one in my family had ever had contact with someone with the degree of “disability” that Kayda had. When telling family about her before we got there, I didn’t tell them too much as I thought that the whole picture might scare them off. So this stony faced gurgling girl on oxygen in the wheelchair was a bit of a shock to my Grandmother and father and stepmother who were there as well. When it was time to start getting her ready for bed I put on the same tape that I used every night at home: Pachelbel’s Cannon with sea sounds in the background. As soon as she heard that her eyes lit up and she started to smile and be quite animated. Wow!!!!! It was clear that she recognized it after only hearing it nightly for less than a month. During our visit with my grandmother Kayda became increasingly happy and responsive. My grandmother fell in love with her and was so pleased when Kayda smiled and laughed in response to her. We had a really good trip. After visiting with my Grandmother for a few days we headed out on our own. We first went to a small town on the outskirts of the Rocky Mountains where I had lived for a couple of years when I was in my early 20s. This was my first trip back. On this trip we learned how long it took to get Kayda organized to go out and that going out for meals just wasn’t practical. We got used to arriving at attractions we wanted to see just before closing time. Kayda seemed to be enjoying herself and handled the traveling quite well. She was rarely gurgly in the van and loved bumps. We had her on oxygen a lot of the time, just in case. We were assuming that when she sounded congested her oxygen level was low. We later found out that we were wrong. However, I’m sure it didn’t hurt her. The highlight of our trip was taking the sky ride on the Lake Louise Gondola. When Dave purchased the tickets he was told that the gondola we’d go on was wheelchair accessible. Ooops; they were wrong. So we ended up leaving her chair and oxygen tank at the bottom. We got on to the lift, which is what skiers use. Kayda was perfectly happy sitting in between us. I was terrified! It was all I could do to keep from jumping off before it started. I’m a big chicken when it comes to things like that. I held on to the seat for dear life and kept telling Dave to stop wiggling and don’t talk to me. Once up I was fine. As we had to carry Miss Kayda (she was about 50 lbs then) and it was nearly time for the mountain to close for the day, we didn’t go very far. We do have a picture of me giving her Ventolin with the puffer while at the top of the lift. It just felt so good to know that we were giving her an experience that other children had. She was quiet throughout but seemed to be content.

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