Chapter 16: The Code Issue: A Conversation Overheard

Ever since shortly after Kayda had come to live with us we’d been working to overturn the “no code” order that was in place. As stated earlier: Early in her first winter the service coordinator and a nurse and myself managed to convince the pediatrician that Kayda could have treatment short of intubation. This was an improvement but didn’t fully protect Kayda. In November of 1994, our “cast of thousands” had several conference calls with officials in the social service ministry. Her Family Doctor and Pediatrician were invited to participate but they refused. They stated clearly that they were NOT in favor of any “extraordinary” means of extending Kayda’s life. They were most against using a ventilator. The pediatrician told the social worker that we as a society are too good at keeping people alive that perhaps shouldn’t be. I think they felt that I would never let them give up on Kayda and would fight to keep her going long past when it was in her best interest. To be fair to the pediatrician he had recently been involved with another family where this had happened (I knew the family so understood his reservations). My big point was always what would happen to her if, say, we were in a car accident and she had a chest injury and stopped breathing and needed a ventilator while she healed. With the order as it stood, treatment could be denied her. Finally in November, the order came down that Kayda was now a “full code”. In early December once again she got ill. She was only in the hospital a couple of days though. It was another cold. For some reason I was standing near the nurses’ station. Our pediatrician was on the phone. I overheard him saying that he just couldn’t support this and what would happen if she were found not breathing and no one knew how long she hadn’t been breathing. I hoped he was talking about another child with similar needs that was currently on the ward. I knew he wasn’t though, and I was right. He was talking to someone in the government who was telling him that Kayda legally had to be given all treatment possible in the event of a life threatening illness or condition. Always, when she was ill, after that, I feared that it would come down to an argument one day about treating her or not treating her. I felt very insecure knowing that all Doctors directly involved with her didn’t feel she should receive intensive care. I ALWAYS carried the letter stating she was a full code with me.