Chapter 7: Doctors and Stuff

When we got back from our trip it was time to settle in to being Kayda’s parents. The plan was that she would enter Kindergarten in late September or early October when her condition was a little more stable. When she came to us it had been several years since she’d had wheelchair adjustments made, seizure meds checked, allergies investigated, teeth looked at, etc. So, I set out to do those. I took her to the pediatrician from our local hospital. I wanted him to check out her seizure meds. I thought she was having lots of seizures and felt changes should be made. I later learned that many of what I thought were seizures weren’t. This “delightful” Doctor (the one who had said “do we treat or don’t we?” when in the hospital) didn’t really examine Kayda at all. He proceeded to tell me that if I was ill he would respond much quicker than if Kayda was ill with the same condition. He said he would “walk slowly” to treat her. He didn’t feel there was any need to adjust her seizure meds as she was going to die soon anyways. Around this same time we had a visit from a nurse to do an assessment of our home as demanded by the foster mom. It turned out that this was really a blessing in disguise. In the course of our discussion Kayda’s no code order and the pediatrician’s statements came up. The nurse (Natalie) said “why don’t you change Doctors?” I said that I didn’t want to go Dr hopping. She told me that in a case like this, “Dr hopping” was quite acceptable. She also hinted at the idea that we didn’t have to sit back and accept the no code order. I need to explain a little of the programs we were involved in. In our province children who were permanent wards went into the foster care system and their guardians were social workers from the social services ministry. At that time the community living branch of the ministry of Health administered the associate family program. The children in this program came either from their birth families or from long term care facilities. Kayda was a baby when the AF program started. The people in charge of the program decided that just because she had no family and was a ward of the government there was no reason for her to sit in a hospital all of her life. So she went in to the associate home I’ve mentioned previously. When she had to be taken out of that home, she was placed in a temporary foster home which is where she was when we got her. The ministry then set out to find her a permanent foster home for her. They just couldn’t find a home where the foster parents were young enough to commit to long term care and could deal with her medical needs. So, they came back to the Associate family program. Because the children in the associate family program were in hospitals or were at risk to go into hospitals, the families screened to care for them were more equipped to deal with high medical needs. They were also prepared to give longer commitments than what was usual in the foster care system. Apparently Karen had had several families to choose from for Kayda but had chosen ours as it was the only home where she’d be an only child. She had always been one of many. One of the stipulations made by the coordinators of the associate family program had been that they would not accept Kayda if she had a no code order. They had no knowledge that this was in place until I mentioned it the first time we took her home. Because social services were still Kayda’s legal guardian this order had to be followed. When she got sick just a few days after we got her and the emergency room doctor was considering transferring her to children’s intensive care unit I just didn’t say anything about knowing they weren’t supposed to do that. So, when it was suggested we try to get this order changed it really became a battle between the 2 ministries. I clung firmly to the support of the service coordinators from the associate family program and was quite worried about Kayda possibly becoming ill and being at the mercy of this order. In late September Kayda became ill. One afternoon I was quite concerned about her breathing. After a bit, she fell asleep, and like the incident in Aug couldn’t be woken up. So, I decided to take her to Children’s-an hr away. When we got there she was still asleep. The emergency room was quite busy so we had to wait for awhile. When I was asked what was wrong with her I said I felt she was quite ill. After a bit a stretcher in the hall was found for her and I overheard a nurse say to another one “mom says she’s really ill” in a very derogatory way. I proceeded to undress her and her temperature was taken. It was 34C (92-93F) and her heart rate was about 30. Boy, did they ever jump then! A cubicle with monitors was found and she was quickly hooked up and they planned to give her warmed iv fluids to bring her temperature up. Then a pediatrician, found her old chart-about 6 inches thick- and found that she’d done this before. He said to stop aggressive treatment and proceeded to tell me that she was dying. Her brain stem and body were shutting down. When I heard that, I automatically became fearful because I knew that if they admitted her and she went into cardiac arrest I would not be allowed to do cpr, nor would anyone else. So, I said to the Dr “I’m taking her home”. He agreed. Before we left, though he sent in a couple of social workers to talk to me about whether I had support at home to help me cope with her death. We went home. By this time it was midnight or later. I put her to bed and at 5 the next morning she woke me up giggling and having a merry old time. Needless to say, she hadn’t died. That was 6 years ago. She has continued to have these episodes from time to time and I no longer take her in to the hospital. I just keep an eye on her at home and she’s always come out of them. For the last several years we’ve had an O2 monitor so it’s been easier to monitor her. Kayda continued to gurgle and wheeze and have what I thought were seizures (I later learned that most of what were thought to be seizures were actually muscle spasms. Kayda had no confirmed seizures until she was about 8 years old). I was concerned because the medications she was on for the seizures were really knocking her out and making her totally unresponsive. I didn’t feel that she needed to be doped up, she needed all the alertness she could possibly come up with. We had a family doctor in the community that I kept taking her back to, to try and adjust meds. This lady’s math skills were worse than mine which is pretty bad as I have the math version of dyslexia and can’t manage much in the way of arithmetic. I knew she was multiplying wrong and prescribing too much Phenobarbital for her. During this time we had the nurse (Natalie) that had been brought in to assess the home supporting us. She had made arrangements for me to be trained in chest assessment techniques as a way of me getting a better handle on Kayda’s chest status. She was also recommending I find a different pediatrician and possibly a family doctor as well. One Monday morning Kayda wasn’t feeling well and I phoned the family doctor’s office, only to be told she was no longer working there. Friday had been her last day. So, that decision had been made for us. I decided to seek out both a pediatrician and family doctor who worked out of a hospital a few towns from us that had a large pediatric ward. I didn’t want Kayda treated by the pediatrician at the local hospital and just didn’t trust their assessments of her condition. They’d misread too many xrays for my comfort. So, I chose the pediatrician I’d wanted in the first place as I knew he’d taken good care of other children I’d known. He knew his stuff. His bedside manner (as I was to learn later) left a lot to be desired, but, he treated Kayda with dignity and respect. His examination of her was thorough. We discussed her seizure and medication status. He said he’d arrange for an eeg to be done. He also decided that she should be taken off one anticonvulsant (Nitrazepam) and put on to another called Clobazam. I knew that the Nitrazepam (Mogadon) was what was knocking her out every afternoon. I had also really wanted her to come off the Phenobarbital too but he felt one change at a time was what was best. He gave me a schedule to follow for introducing the new med and withdrawing the old. Oh boy! I hadn’t a clue what we were in for! Something that had never dawned on me was that Nitrazepam is in the valium family and therefore addictive. Poor Kayda! She fussed and whimpered and yelled her way through the next 2 weeks. The only thing that settled her down was being held. So, I held her all day long. We sat in my rocking chair and watched Peter Paul & Mary and Neil Diamond and Raffi videos. She was very quick to complain if I put her down too soon. After 2 weeks of this I realized that she was calming down and becoming happier. She was no longer zonked all the time. And…..she had decided that her main purpose in life was to be held. Quite a change for this gal who previously cried if picked up. By this time it was mid-late November and she still hadn’t started school. The school staff, vision teacher, speech person, nurse etc. had all come to visit her at home. They were waiting for her condition to stabilize. The nurse was a real “delight”. I groaned every time she called me or came over. It’s hard to describe why but she was overwhelming and seemed to panic easily. She decided that Kayda would need a nurse as an aide at school. As time went on, though, and Kayda became healthier and more responsive to me I started reevaluating sending her to school. I knew that as soon as she got with other kids she’d get sick. I just didn’t think it was worth it but knew that the associate family and school district policies were to have kids in school with their age appropriate peers. When I met with the new pediatrician for the first time I asked him for his opinion of Kayda attending school. He felt that the risks to her health outweighed any socialization benefits. I learned later that he didn’t think she was alert enough to get anything out of being at school. Armed with his opinion I approached the service coordinator and asked if I could keep Kayda home from school that year? She agreed. When I spoke with the staff from the school they expressed interest in trying to have Kayda attend in the spring when the risk of illness was less. I was happy with that and Kayda and I settled in and got to know each other better. My husband Dave was around but he was working part time at a group home for adults and children with similar needs to Kayda-several of the children that had been considered for us lived at homes run by the same organization. I had worked there a few years earlier. Most of the time he worked nights which was a real challenge for us because Kayda was quite noisy, especially if she didn’t sleep at night, and our house was very small so there was nowhere Dave could go to get peace and quiet while sleeping. To put it mildly, there was lots of tension. Our very hyperactive noisy dog didn’t help either. We managed though. During this time I noticed that the bears that I always put under her arm when she was lying on her sidelyer kept landing on the floor rather than staying under her arm as they had when we first got her. I didn’t attach any real significance to this though at the time. She was being seen fairly regularly in our home by an OT and PT. We were working on stretching her legs and arms to try and prevent further contractures. She had foot and hand splints made. She had none of these things when she came to us. The hand splints were to be worn at night to try and give a sustained stretch to her fingers and wrists. Our house was too small for her to use her stander-a Rifton that was huge. I did stretches every day though and gradually her range increased. Her health also stabilized and I wasn’t running to the doctor every 2 days anymore. At this time we just saw the pediatrician. We were looking for a family doctor but hadn’t found an appropriate one yet.