The last weekend in September I noticed that Kayda was getting gurgly in her wheelchair, something she hadn’t done for a long time. As it cleared when she was lying down I didn’t pay too much attention to it. On Monday morning I brought her to school. She seemed fine. She was a little gurgly but had been yelling so I felt it was ok. I had to go to the lab in town as I seemed to have a bladder infection. It was an untreated bladder infection that caused my kidney infection earlier in the year so I paid attention to any symptoms. The trip to the lab took 20 minutes. It was the first time I had left her at school. When I came back, everyone was worried. Kayda was gurgling like crazy. We laid her down. No change. After 20 minutes, I phoned the doctor’s office. Their earliest appointment was 6:30, unless, the receptionist added as an afterthought, she’s having breathing problems. I said she was and was told to bring her in right away. The doctors’ office was a good 45 minutes away. As I couldn’t hear her breathing while driving (her wheelchair was strapped down at the back of our minivan) I kept hoping it was a false alarm and she’d be fine by the time we got to the Doctors. She wasn’t. The doctor saw us almost immediately. By that time she was very congested, coughing a little and whimpering. It was decided by the doctor that she needed to be admitted to hospital. Arrangements were made and I drove her to the hospital-another 20 minutes away. The assumptions as to the cause of her sudden illness by the doctors were that she had aspirated. She was in the hospital 6 days. All the tests that were done showed no pneumonia and no aspiration. She just merrily gurgled along. I stayed with her at the hospital of course. That was fun. She was in a 10 bed room which they called the nursery which was full of babies crying. On the Saturday morning the pediatrician came in, turned off her oxygen for 5 minutes and said she could go home. I was happy to go home, but scared stiff. Her breathing hadn’t improved at all from when she was admitted. I’ve since learned that Kayda’s oxygen level decreases slowly. But, Doctor --- said she could go and his word was final, so we went. Arrangements had been made to have someone from the company my husband worked for (they had a series of group homes for kids and adults like Kayda) to come in and stay with her while I had a bit of a rest. I contacted her (we had worked together when I worked for the company) and she agreed to come to the house. It was nice to have a break that night for even a few hours. Kayda was a very sick little girl. She sounded horrible. She was very congested and was wheezing quite heavily. She needed suctioning every few minutes and nebulizer treatments every 2-3 hours around the clock. Every breath was a struggle. We managed at home for about 2 weeks with no improvements and me terrified. During this time the nurse from the school came for a visit and decided that Kayda would have to have a nurse as her aide at school. To me, it didn’t make much sense to make a decision like that based on a visit while she was ill. But, who am I, I’m just the mom. Moms don’t know nurse stuff. After visiting our family doctor several times, it was apparent that Kayda wasn’t getting any better. Strangely enough, it was her asthma that was causing most of her trouble. She sent us over to the Emergency Room one afternoon to be seen by her pediatrician. As soon as I saw that her oxygen level was only 91%* I knew she’d be admitted. That time she was in for 10 days. One afternoon as I was standing near her bed watching her get sicker the pediatrician came up to me and said “you realize of course that if she needs intensive care she won’t get it”. I argued with him that she needed to be given a chance to recover on her own even if she should stop breathing. He disagreed. He felt she’d outlived her life expectancy and that it wasn’t fair to expect her to live any longer. As soon as he left I put in a panicked call to our service coordinator Laura who was actually in a meeting with Karen who had been with us when we first had Kayda. They settled me down and reassured me that one of them would get there as soon as possible. I picked up Kayda and held her all afternoon. I wasn’t putting her down and letting anyone make the decision to not treat her. If I could have I would have picked her up and ran home with her. The next morning I told the family doctor I wanted to take Kayda home. She asked me why and I told her about what Dr ___ had said. She said that he had written that in her chart so she was pretty sure why I was saying I wanted her to go home. She didn’t feel Kayda was well enough to go home of course. So, on top of worrying about her condition was the fear that I’d have to beg someone to treat her if she got worse. Even with subsequent changes to her code status that fear never left me. Then, my beautiful girl showed her stuff. On the 9th day in hospital, which was 1 month and 2 days after she first got sick, she got better. We hadn’t been able to get her off of oxygen and the pediatrician kept talking about her maybe having a collapsed lung. We took her off of oxygen to have a bath and left it off for awhile. We then put her back brace on and rechecked her oxygen level. It was 98% and there were no gurgles or wheezes. She went home the next day. It appeared that her whole illness was just her version of a cold and that the asthma was triggered by the cold virus. I didn’t learn until much later that this is really common. For many people asthma is only a problem if they get a virus. At this time Kayda was started on Pulmicort twice daily by nebulizer to try and prevent the asthma.
*A note about oxygen levels; at that time 93-94% was the lower limit off oxygen. The same doctors later set 90% as the limit. Later when Kayda switched to a new pediatrician, his limit was 95%. The hospital that he worked out of has 93% as the limit.