Chapter 21: Moving and Surgery

Kayda went to her respite caregivers for 5 days when we moved in the middle of August. There was no way I could manage to care for her amidst all the chaos and confusion. So, by the time I brought her home, we were somewhat settled. One thing that surprised us, was that, even though the new house was more than double the size of the old one, the hall and doorways to rooms were such that the portable lift we’d used in our other house would not go through the doorway to her bedroom. That wasn’t a big deal at first but I knew that it would be different once she was in casts after her surgery.

Before we knew about the surgery I had taken her into her new school to be registered. I met the principal and had requested that Kayda do another year of grade 1. She had missed so much school the year before. Also, I knew that the longer she could stay with younger children the better. The principal seemed nice and promised to consider my request. He made sure I knew that she couldn’t start to attend the school until they had hired an aide for Kayda.  I was very apprehensive about the school year ahead after all the problems of the previous year. I knew that the staff from the first school had had meetings with the staff of the new school and I was sure that I was labeled as a “problem” parent. Through discussions with the new health nurse, I learned that a big stumbling block in the eyes of the staff of the new school was the 20 page care plan drawn up the previous year. Everyone was terrified of caring for such a complicated fragile child. After several meetings the nurse and I had whittled the care plan down to about 4 pages. 

We got the call giving the date for her surgery 1 week after we moved into our new home. I just happened to be on the way home from picking my brother Sam up from the airport again. This time he was moving to our province to stay. He stayed with us for a couple of weeks. At that time we discovered that some of the appliances in our “new” house didn’t work very well. So, that meant taking laundry to the Laundromat. Dave and Sam volunteered. I still have clothes with purple blotches from their attempts to help.

The surgery took place 3 weeks to the day after we moved.  I can remember hanging pictures on the walls as I prepared to take her to the hospital.

As expected, surgery was a nightmare for all of us. The nurses and doctors taking care of her were wonderful and compassionate and assured me they would take good care of her during and after the surgery.  Dave and I stayed with her as long as possible before they took her away.  We took turns holding her and were very afraid that that would be the last time we did.  She came through the surgery ok but they had had to stop without snipping her hamstrings as planned as she wasn’t looking well. I guess she was cold and her face was starting to swell after lying on the table for so long (6 hours!).  The first time we saw her in the recovery room she was so white.  Her eyes were swollen shut and the casts looked huge.

Her recovery was very slow.  She was in a lot of pain.  She didn’t fully wake up for about 4 days. One of the first things we had to face was that she was very sensitive to noise. Even the tiniest noise (the click of cupboards closing was the worst) would make her jump and tremble with pain. About 24 hours after the surgery this was a big problem so the pediatrician prescribed Baclofen to see if it eased her spasms. Within minutes of the first dose she went wild. She screamed and wiggled constantly. She was moving so much that she was actually lifting her casts up off her bed and almost sitting herself up. She got one more dose after that with the same effects. The nurses and I agreed that it was better for her to live with the spasms and we didn’t give the Baclofen again. We just kept the door shut and shuddered when there was a noise in the hall. Social services had agreed to pay for a private room for her which was a blessing.

Apart from not waking up very much, Kayda also had trouble with accepting formula again. Every time we increased the amount of formula she got, she’d start vomiting. I think that prolonged her stay more than anything else. After a few days too, her temperature started going up and her vomiting increased. The doctors did a lot of checking and finally realized that she’d gotten a urinary tract infection most likely from the catheter she’d had since the surgery. She had been doing really well at first so her IV had come out fairly quickly. When she got this infection it was clear she needed more fluids than her stomach was accepting. So, she needed another IV. It took hours and many tries before finally the Pediatrician was called in. He managed to get it into a vein on her foot. We all knew there would be dire consequences if anyone dislodged that IV. Well, as Kayda got better she managed to wiggle enough to get it out, only no one noticed for awhile until she had a very large swollen foot. The ulcer caused by the IV coming out, got infected over the next few weeks and left a large hole in her foot.

This surgery was tremendously painful for her. Any movement hurt. Gradually though she woke up and tolerated more food and movement. After 10 days it was time for her to come home. We had borrowed a reclining wheelchair to use while she was in casts as she wasn’t allowed to sit at more than a 40 degree angle. But, it didn’t have proper straps and therefore wasn’t safe to transport her home in. So, she went by ambulance. By this time I knew I wouldn’t be able to lift her on my own in the huge casts (without casts she weighed about 70 lbs by that time). And, I also knew that the lift wouldn’t fit in the bedroom. The fact that we had a very over active dog combined with how tender Kayda was at that time, led to the decision to move her bed to the living room. That way the lift could be used and her bed was high enough that the dog wasn’t going to jump up and bump her sore legs. So, the queen came home. It took quite a bit of adjustment at first to care for her at home. Gradually though we became accustomed to the casts and her needs and everything was fine.

Chapter 20: Kayda’s Summer

In the meantime, Kayda was healthy and very happy and loving life, and summer was coming. In May 2 of my brothers came for a visit. They lived some distance away so I didn’t see them often. My youngest brother was catching a plane home to Ottawa late on the Monday after the May long weekend. The Wednesday before, we drove to the interior to see my Grandmother. That was an interesting trip to say the least. We learned that you really should not try to drive the whole distance on one tank of gas. It was a 5 hour trip, much of it through and over mountain passes. Therefore gas stations were rare. When we got to the town where we could have filled up, the tank looked ok so we decided to keep going. The highway was basically a long uphill (about 40 kilometers) and then a long downhill the same length more or less. By the time we got to the top of the hill, the gas tank was on empty. I’m somewhat of a worrier and couldn’t keep my eyes off the gage and couldn’t figure out what we’d do if we ran out of gas. My brother drove so I could sit in the back with Miss Kayda who didn’t like sitting in her wheelchair during long drives. She preferred to sit on the seat with Mom next to her. I worried away. I don’t know how that changed things but, that’s just the way I am. Well, we made it but decided to go straight into town to get gas rather than going straight to my Grandmothers. When I phoned and told her we would be a late getting there, it turned out that she’d forgotten entirely that we were arriving that day. We were able to pick up some groceries for her any ways. Despite the rocky beginnings we did have a nice visit. Visits with my grandmother always involved shopping trips into nearby towns as she didn’t have a vehicle so didn’t get out that often. As I’m a “shopaholic” that was fine with me. However, Kayda hated shopping. She was ok if we kept moving but would holler very loudly whenever we stopped. Our plan had been to leave Sunday morning so that we’d be back at our place with a whole day to spare before my brother Sam had to catch his plane late Monday night. But, we didn’t talk to Kayda about our plans. Saturday evening as we were preparing for my dad and stepmother to come for a visit, Kayda started throwing up and throwing up and throwing up. It went on for hours. When I checked her temperature it was 38.6 (normal is 37). Finally I decided that she had to go to the hospital. They checked her out there. They used an ear thermometer and it said her temperature was fine so they sent us home. When we got back to my grandmothers’ she still felt warm so I checked her temp again (I did it rectally). It was still 38.6. She vomited a few more times during the night but then settled. In the morning I just debated and debated over the wisdom of making that 5 hour trip. She was still vomiting a bit, her temperature was still up and her breathing didn’t sound very good. I was afraid that she had aspirated. By about 10 I decided we couldn’t make the trip and that she really did need to be seen by the Doctor again. When we got to the Emergency Room, the Doctor who examined her said that she didn’t feel like she had a normal temperature as indicated by the ear one they used. Sure enough it was still 38.6. Kayda was also becoming very dehydrated. The decision was made to admit her overnight. Yikes!!!!! She did fairly well overnight and we were told she could be discharged as soon as the pediatrician had seen her. But, no one could tell me when she was expected to arrive. I phoned my brothers and asked them to pack up our stuff (have you ever had 2 bachelors pack for you?) and then come and get us at the hospital. The town where the hospital was was a half hour drive from my grandmothers. All day I waited and waited for the Doctor to arrive. I got tenser and tenser by the minute knowing how close we were getting to when my brothers’ plane would leave. Finally around 2 the pediatrician arrived and Kayda was discharged. What a drive home that was!!!! She still had a very high temperature and couldn’t tolerate formula. It was also very hot outside and we had no air conditioning. Apart from one stop for a meal (and to get gas before the next leg of the trip-we’d learned our lesson), we roared home. I believe we got home about 20 minutes before Stephen had to leave for the airport to catch his plane. This sort of event was quite typical of Miss Kayda. She liked to keep us all hopping. But, after that experience, I was no longer as scared about what I’d do if she got sick when we were away. I knew that other Doctors and emergency rooms could manage with her just fine. After that time, I made sure that Kayda’s temperature was always taken rectally as no other way was accurate. As Kayda was so healthy and aware at that time, I worked hard to make sure she had a happy busy summer. It was a very warm summer so we spent part of every day out in the little pool I had bought for her. She loved being in the water and splashing. She was able to float on her own in a life jacket that supported her head. She also went to a 4 day long day camp program in the town. Her aide from school went to camp with her. That was an ok experience but not great. The program was based in the curling rink and there wasn’t even any running water in the building. That’s no good for cleanliness purposes when you’re both changing diapers and tube feeding a child. The activities themselves too, just weren’t very adaptable for a child with Kayda’s limitations. But, she had fun most of the time. I did get called on the 2nd day saying she wasn’t seeming right. I got there, and as soon as she heard my voice she smiled and was very happy at home the rest of the day. The little imp!!!!! Remember, this is a child that was supposed to be totally unaware of her surroundings, never mind having separation anxiety or being manipulative. I was quite annoyed, as those 4 days of day camp were my only concentrated time to pack for our move. Packing seemed to take the whole summer with brief breaks for fun. We even managed to take Kayda to the local country fair and she went for a ride on the ferris wheel with Dave. The pictures I have of that show her “talking” away the whole ride. She was very vocal that day. The one difficulty of the summer was her sore hip. As time went on, she was uncomfortable sitting in her wheelchair for very long, so the only way I could feed her, was to sit her on my lap on the couch. She was a big girl so this wasn’t easy. I was having trouble at that time with sore shoulders and holding her and trying to keep her head from arching back for hours every day didn’t help. She didn’t mind the extra cuddle time at all though.

Chapter 19: Hips

Like most children with severe neurological problems Kayda’s legs and arms were very tight. I knew that when sitting her legs were “windswept”: one leg twisted out and the other was twisted in. They looked like the wind had blown them over. I thought that we had done really well as she hadn’t had any surgery. In March when she had her feeding assessment the orthopedic surgeon just happened to be at the hospital and took time to examine her. He seemed to be fixated on the fact that she was missing most of her cerebral hemispheres and just did a quick examination. He said her hips were fine but at risk for dislocation. Early in May, I discovered that movement of one leg was causing Kayda severe pain. Every time she moved her left leg she jumped and winced. Being the stubborn child she was she kept moving it. I took her to our family doctor. She ordered xrays and said that the hip was probably subluxed and that she’d need surgery to snip the muscles at the top of her legs. A few days later we got the call that was to affect over 2 ½ years of our lives; Kayda’s left hip was dislocated and the right was on its way out as well. That’s when I learned that instead of a 1 hr surgery to snip muscles, she would now need a procedure that took 5-6 hours and involved breaking bones and bone grafts. I was devastated! I’ve always had a great fear of anything involving general anesthetic or surgery for Kayda. One of the children I had provided respite care for had died after surgery in the same hospital where Kayda would have hers. The other problem with this hospital was that it was an hour away and that it would be several months before the surgeon could even examine her. Then I remembered that an orthopedic surgeon who worked out of the hospital she usually went to had clinic days at the Child Development Centre in our town. He agreed to examine her and outlined the proposed surgery. I cried of course. He didn’t know how soon it could be planned as beds are closed during the summer.

Chapter 18: School-again

While visiting Laura we talked a lot about Kayda’s school situation. I came away convinced that the school she was attending just wasn’t appropriate for her. We had a meeting shortly after I got back (while Kayda was still in the hospital). I brought up those feelings as did other people. The school staff just didn’t get it, that having Kayda in the building but by herself just wasn’t inclusion. Her guardian at that time was a very large man. When the school staff were saying that they didn’t think they could manage to have Kayda attend school full time the next year, he banged his hand on the table and said “that’s not acceptable!” The one good thing that had come out of the year is that they’d applied to a program run by the province, which provided support and suggestions to schools about including children like Kayda. The down side is that it would be sometime the next year before they could come. What I had decided I wanted for Kayda the next year was to go to a school where some children from a group home attended. She couldn’t be enrolled in their school as it was run by a different ministry but I thought that if she attended the school that housed the resource school she could participate in some of their activities. At that point I was convinced that Inclusion didn’t work for a child with Kayda’s needs. To me it was more important that she be with other children no matter what needs they had than for her to be included with typical kids. I knew I couldn’t continue to fight with the school. We just weren’t going to agree on what was important. Because of these problems, Dave & I started talking about buying a house in a different school catchment area. We’d thought of eventually buying a house for a long time but it just hadn’t been feasible. My Maternal Grandmother had died earlier in the year and had left me some money. We’d been planning a holiday but decided to put it towards a down payment for a house. There were houses available in the same neighbourhood as the school but we purposefully stayed away from them. We ended up buying a house way at the other end of town. It was only a few minutes from where my husband worked and was also close to someone that I had worked with when I worked at the same facility. This lady had teenage daughters too; prospective respite caregivers. The school in our catchment area was very old and on several levels and wasn’t fully accessible. There was no area for changing Kayda either. The next closest school had recently been renovated and was fully accessible. The principal had been at a school the year before where another noisy multiply challenged child attended. There would be 2 other children with mobility problems attending this school as well. Our decision was made. That was the best possible decision we could have made for Kayda’s school experience. Plans were made to move in to the new house in the middle of August.

Chapter 17: Eating

When Kayda came to us she had had major problems with aspiration throughout her young life. She had had a swallowing assessment done when she was about 3 years old and it showed most of the food going down into her lungs or up through her nose. She was also unable to swallow, suck or cough. The decision was made that there would be no oral feeding. As time went on and Kayda started getting stronger and was clearly swallowing and sucking and seemed to be handling her saliva, therapists started suggesting that we should reconsider oral feeding. When the staff on the feeding assessment team had been approached about it they felt that it was a waste of their time to reassess Kayda. During her hospitalizations in October one of the therapists had asked me about this. I said that the only way to get a feeding assessment done for Kayda would be if I made a fuss or pushed the issue. This physio noted how much Kayda liked having things in her mouth and suggested I push the issue and ask again. She had also taught herself how to cough during her illness. I don’t know why I did it, I guess I just wanted to see what happened; one day I put a tiny amount of fruit on a spoon and put it in Kayda’s mouth. She swallowed. She didn’t cough or splutter. I put some more in her mouth. She swallowed again and seemed just fine. I was scared to death. I knew how risky this was. Each day I gave her a little more and she seemed to enjoy it. As I thought over what the purpose of feeding her could be I felt it was only for her enjoyment. I didn’t think she would ever be able to take in enough to make a difference in the amount of tube feedings she received. Well, once again, Kayda proved me wrong. By the end of January she was eating 3 full meals a day and only getting liquids through her tube!!!!! When I phoned the dietician who managed Kayda’s intake in mid December to get some guidelines on when I could start cutting back on formula, she said “I think she should have a feeding assessment.” “Good idea” I said, laughing inwardly. The assessment wasn’t until mid March. By that time she’d been eating orally for over 3 months with no problems whatsoever. She did cough from time to time. She couldn’t handle anything with rice in it no matter how finely I pureed it. I made all of her food except for her meat. As I knew how risky it was to feed Kayda orally, I was the only one who fed her. I went in to school every day at lunch time to feed her. We did have our respite people trained but no one else was allowed to feed her. It was a pet peeve of mine that as long as she was tube fed people were afraid to care for her. Once she started eating orally, they’d say, oh now I’ll feed her. Oh no you won’t was always my inward response. People just don’t realize how easy and safe tube feeding is compared to oral feeding for children like Kayda. The feeding assessment was at the children’s long term facility that Kayda had been in when we first met her. Although it was only an hour from our home, I made arrangements to stay at a house run by Easter Seals in the city. Her appointments started at 7 am and in order to be on time, we’d have had to leave home at 5 because of rush hour and I would have had to get her up around 3 to have her ready for 5. The first day was a series of appointments with various professionals including the dietician, a pediatrician and an OT and speech pathologist. The last two therapists also observed me feeding Kayda. They had asked me to bring foods that she had trouble with as well as those she managed fine. Kayda was cooperative and did cough and choke on the dish that had rice in it. Based on what they saw on that day, both therapists were convinced that Kayda was aspirating on her food. The next morning we went to the Children’s Hospital so that she could have a video fluoroscopy done. We arrived to find the therapists we’d seen the previous day waiting for us. They took Kayda to radiology while I went and registered her. When I came in to the room Kayda was screaming. The minute she heard my voice she settled down. This was the first time that she panicked when I’d left her somewhere. A video fluoroscopy is a fascinating test. The child is sat at a variety of angles that they would normally be fed at, and fed a variety of textures of food that have been mixed with barium. Pictures are then taken of the person swallowing. The radiologist supervising the test that day was the same person who had done the previous assessment on Kayda. As the therapists spoke with him, I heard them telling him that they were sure she was aspirating. I fed her while they watched what was happening on the screen. Much to their amazement (not mine) she wasn’t aspirating and no food was going up her nose. The pictures did show, though that she had a delayed swallow and that food pooled right near the opening to her esophagus. Both of these put her at risk for aspiration. That afternoon, we had a meeting of our cast of thousands at the Long Term Care facility. Three people from the school came as well as her local physio, speech and occupational therapists and her legal guardian and service coordinator. The video from the fluoroscopy was shown. The recommendations were that it was really risky to feed her orally but that as she was enjoying it, it could continue. It was recommended that only someone who knew her well and had been trained to do so feed her. They also said that she did not need to be fed by a nurse with a suction machine handy, which is what the school people had been saying. It was agreed that after I was satisfied with how she was being fed at school, I could stop coming in every day at lunchtime. Incidentally, that was the last long period of time that Kayda ate orally. Various illnesses and other events kept interfering and making it difficult for her to eat. She was still always (when well) given the option to eat orally but wasn’t pushed if she chose not to. That’s the benefit of having the feeding tube. You don’t have to force a child to eat when they don’t feel like it. I was always nervous when I fed her, afraid that she would aspirate, even though she never did. Two days after Kayda’s feeding assessment she and I went to visit a friend and her family in Winnipeg. We had a real nice visit, despite the fact that Kayda was on her sleeping only every 2nd or 3rd night pattern. As we shared a room my sleep was quite interrupted. Laura and I had worked together in a daycare in a small town in BC when we were in our early 20s. She had 3 children at the time we visited her. She’d had almost no exposure to a child with Kayda’s needs. It was the first time in well over 10 years that Laura and I had time to visit. We had timed our visit well as Liz’s children were on their Spring Break the week after. Laura’s youngest child was the same age as Kayda and also a foster child. Her needs were very different though. Near the end of the week A got a cold. She sat across from Kayda at the dinner table. Whenever Kayda has a cold it’s really hard to get her to cough so any cough is met with applause. I kept having to stop myself from saying “good cough A” each time she coughed. On the flight home, I knew something wasn’t right with Kayda. She was breathing really rapidly and just wasn’t herself. We had an hour stopover in Calgary and I almost told the flight attendants we needed to get off there. She relaxed a bit during the time we were on the ground as I was able to let her lie across all of the seats. I did alert the flight attendant that came on in Calgary that she was having a little trouble. She made sure that they took on extra oxygen. It was a very tense flight but we made it home. I knew that night that she was sick but as she was asleep I just left her. By 11 the next morning we were on our way to the hospital via ambulance. She had viral pneumonia and a severe flare up of her asthma. She was in the hospital for a week.

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.

Chapter 15: Celebrating Kayda

I’m going to back up a bit in this narrative. While still well, Kayda celebrated her 6th birthday. We had a huge party for her that started on Friday night and ended late Saturday. Friday night Amanda

and Cathy came for a sleepover which was fun. Amanda and Cathy both have cerebral palsy and Cathy was still tube fed at the time. I’m nuts though and loved having them there. They both adored Kayda. Saturday morning their mom picked up Amanda to take her to another party and I got Cathy & Kayda ready. We have video tape of the 2 sitting next to each other watching tv, holding hands and both hooked up to their feeding pumps. The main party was in the form of an open house. We’d invited a zillion different people-actually maybe 20 or so. Mostly adults. The theme was Lion King. I’d ordered a 3 foot long Sub from Subway and we had the usual munchies and a Lion King ice cream cake. As I watched Kayda throughout the day I was overwhelmed with the changes since the previous year. At her 5th birthday party she’d been so congested she could only sit long enough to have her picture taken and the rest of the time just lay on her side lyer and listened. This year was so different. She sat in her wheelchair most of the day with no gurgles or wheezes. She smiled and laughed when spoken to and obviously enjoyed her gifts. Her hands constantly explored whatever was on her tray. She got several books that played music and she was able to activate them on her own some of the time-Amanda and Cathy helped when she couldn’t. Her favourite gifts were a teddy bear from Amanda and Cathy and a Fisher Price telephone from another friend. Two days after her party she picked up the receiver of the phone ALL BY HERSELF, over and over. What a miracle that was!!!!!!!!! Most of the day she was content

to just feel her bear whom we named Ted. And, the biggest wonder of all, to us, was that she ate some ice cream cake! (I’ll tell you about her eating in the next chapter.) Our last guests didn’t leave until well after 9 but she was still happy and alert. The next day I took her to see the children’s singer Raffi perform. I started to cry at the beginning. I was overwhelmed with the changes in Kayda. Who would have thought, a year earlier that she’d be so alert and able to enjoy a concert along with other children? She beamed throughout the concert and obviously recognized many of the songs. This was not the girl we’d brought home nearly 18 months earlier!!!!! The presents I bought for her for this birthday and Christmas weren’t toys she could operate by accident as they’d been the year before. They were toys she could pick up and manipulate by herself.

Some videos of Kayda's birthday party

Chapter 14: School: The Nightmare Begins

Once we got home I phoned the school to let them know that Kayda would be returning to school in 2 weeks. A nurse was hired to care for her at school. She started back and I assumed that she would attend a full day just like any other child and that they had had a further month to prepare for her arrival so should be ready. Huh!!!!!! We had thought that having a nurse to care for her at school would lower their anxiety level. If anything it raised it. They were really fixated on the fact that she was a “level 3” child (required nursing care). I had tried to fight getting the nurse as she wasn’t at school when she needed a nurse, she was at home. Her health and breathing were fine now. If they weren’t she’d stay home. The school staff started constantly balking at having her there. Their only educational plan for her was for her to use a big red switch. They didn’t know why but that’s what multiply challenged kids do. They were also going to teach her to be quiet by taking her into a room by herself and letting her sniff strawberry extract each time she was quiet. After these sessions by herself it was library time and the librarian was mad because Kayda kept making noises in the library. Well, think about it; she’s blind, she’s been in a room by herself with one adult and told to be quiet and then taken into another room and is also supposed to be quiet. Her noises were her way of trying to find out what was going on around her. The nurse wasn’t working out overly well either. She was quite young; just out of nursing school. Her movements with Kayda were very jerky and fast which made Kayda tense. The nurse also didn’t like the noises Kayda made and every day I got comments about how noisy she was and how she kept “crying out”. One afternoon I had had it with this. I looked at her and said “do any of the other grade 1 children sit and not say a word all day?” “No” she said. “Then why do you expect Kayda to? Her noises are how she talks”. She had no reply to that. At the beginning of December a big meeting was called by the school. They were very angry with us. Their main concern was that Kayda was going to die and then how would the school handle that. They continued to state that her noise made more time in the classroom impossible. We later learned that Kayda spent more than 2 hours each day in a room by herself with her nurse or a teacher’s aide. That didn’t include the time taken for personal care. I don’t think anything got resolved at the meeting. The physio, vision teacher and OT all had suggestions on ways they could include Kayda but they just didn’t seem to get them. The school staff seemed to think that because she was in the same building as the other children and went to music class she was included. The day after that meeting she got sick again. It was another cold with asthma as her major problem. She was only in the hospital for a couple of days this time. She was sick over Christmas but we still went to my Grandmothers and then to another town while Dave went skiing. She checked out the local emergency room one day. I was quite happy with their treatment of her. They said she had pneumonia which I didn’t believe. Her xrays are very hard to read as her lungs are so badly scarred. Her oxygen level was ok so I agreed that I was ok to care for her at home (the motel). Once again, she got better one month and a couple of days after getting sick and did it over a 10 minute period.

Chapter 13: Complications

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.

Chapter 12: School

In our school district all children went to their neighbourhood school with their age appropriate peers. Sounds like a good idea, right? Not always. At the school Kayda was to attend there was only one other child with a noticeable “challenge”. In late August the school nurse and I went over Kayda’s care plan. As her condition was so much more stable now than it had been the previous year it was decided that she could manage with a regular special education assistant (SEA). This was an older lady who had been the SEA for another child who had been in a wheelchair that no longer attended the school. At first things seemed to be ok, except that the teacher wouldn’t let Kayda in to the classroom for about 45 minutes. She felt Kayda’s noise would bother the other children. The aide too seemed very quick to take Kayda out of the room and off for walks by herself. During the month of September we worked on training the aide to do Kayda’s tube feeding and other care and we gradually increased the amount of time she attended. I had to stay in the school though. During that month I learned that 2 of the 3 grade 1 teachers (they team taught in adjoining classrooms), as well as many of the other teachers felt that Kayda shouldn’t be at school and that it was taking time away from the other kids. On the good side was the fact that she had an excellent back up team including a Physiotherapist, Occupational Therapist and vision resource teacher. They were all very inclusion minded and had excellent suggestions on how to adapt the equipment and environment for Kayda. By the end of September things were going fairly well and Kayda seemed to be enjoying school. Her aide was nearly ready to manage on her own with her.

Chapter 11: Ontario

At the end of June, we totally abandoned our senses and went to Ontario for 2 weeks. That may seem like a simple task, but as any parent of a special needs child knows, there are no simple tasks when trying to holiday with your child. Ontario was a 5 hour flight from our home. Kayda actually was very good on the plane. With the help of Bruce (her big pink dinosaur soother the trip went really well. The first week was spent in Toronto with Dave’s dad. As he speaks very little English and talks too fast for Dave to do much translating Kayda and I heard almost no English the week we were there. It was quite an experience. At night we watched old movies in Spanish. I was amazed that I understood as much as I did. We went to several Latin American restaurants. We did quite a few of the touristy things. We went to the Toronto zoo. Boy is that ever big!!!!! We probably saw less than a quarter of it. Of course we got a late start as it took so long to get Miss Kayda ready. The highlight of that week was a 2 day trip to Niagara Falls. We stayed in a motel right on the main strip but fairly far down. I hadn’t been since I was about 13. Dave had gone frequently when he was younger but hadn’t seen it for many years. It was nice because we were able to afford to do a number of the activities. Kayda really seemed to enjoy herself, even getting wet in the spray. She was so good even though we stayed out to nearly midnight. As time progressed and Kayda continued to develop and blossom we learned that she is a very determined stubborn girl. At that point she liked to have her arms sticking straight out to the side, no matter what they hit along the way. This was especially challenging in Niagara Falls as it was very crowded and you had to stand in line to see every attraction. Most of the lines were narrow and zig zagged. It was “delightful” to try and push a wheelchair and keep her arms from bothering too many people or getting caught on something. When staying with Dave’s dad Kayda had to sleep in the same room with us. What fun! not!!!!! She was in her sleeping every 2nd or 3rd night routine. Dave’s dad slept late in the mornings so it was quite tense keeping her quiet. The night before we drove to Ottawa she giggled hysterically ALL night. No matter what we did and how much sedative we gave her she giggled. I was very glad that Dave did the driving. The second week was spent in Ottawa with my mother. We did quite a bit there too including a trip to Montreal where I had worked many years earlier. It was my first time back in 12 or so years and my first visit with the daughter of the person who had been my closest friend there. We also went to a light show on Parliament hill one evening. For Kayda’s benefit we tried to stay home every 2nd day. She was pretty good. One day while visiting with my mother, it was quite warm (for us anyways) and Kayda’s temperature went up. I immediately stripped her down to just a diaper. That act had the same sort of long range effect as had my putting Bruce near her mouth. With no shirt on, she discovered her feeding tube with her hands. Once she finds something she won’t leave it alone. We have video tape of her lying on the couch playing with it. Unfortunately (or fortunately depending on how you looked at it) she continued playing with it so much the site started bleeding. A month later it was decided that she needed a tube that didn’t hang out for her to play with. That was when she got her first “button” feeding tube. It wasn’t nearly as much fun-she couldn’t find it. After 2 wonderful weeks we headed home. It was such a good feeling to know that we’d taken a holiday and given Kayda the experiences that any other child could have. And…..most important of all: she didn’t get sick!!!!!!!

Video of Kayda playing with her tube while on holiday in Ottawa

Short video of Kayda the first day we were in Toronto. Just shows how responsive she is to people's voices

Chapter 10: School; Warning of the Nightmare to Come

Just before our “delightful” trip away we had had a planning session for Kayda. It was sort of the tail end of the placement process for the associate family program. This was attended by what we came to call her “cast of thousands”. This included social workers including her legal guardian, various nurses, and staff from the school she would be attending. The changes in Kayda since she’d come to live with us were noted. Several people had noticed that if I was talking to someone Kayda would start making noises and get progressively louder until I turned and spoke to her. They also noted her explorations with her hands and mouth and that she was just so much healthier and happier than she had been. It was reported too that several of us had started the process to have her code status changed. In January the service coordinator, a nurse and I had met with the new pediatrician and he had agreed (reluctantly) to modify Kayda’s code status. CPR, stimulation medications and all other treatments short of intubation were now permitted should she go in to cardiac arrest. A note was also made of the professionals that she had seen since her arrival in our home. It included about 45 people over a 6 month period. We had, though, discovered that she did not have allergies, seizures, and that her hips were not dislocated. The other outcome of this meeting though, was the decision that she would start attending school for short periods of time after spring break. A meeting date was set up to go over her school plan at a future date. Arrangements were also made to have the nurse for the school system start preparing Kayda’s care plan. The nurse did this on one of the days when I was first ill and was actually on my way to the hospital emergency room. She kept asking questions even though I was obviously in great distress. This sort of “tact” was quite typical of this person. Around the middle of March we had our first meeting at the school. I still wasn’t well and Kayda was still recovering from her bronchitis. She quickly became gurgly in her chair and had to be lied down. A nurse was with me and was able to care for her while I spoke with the school people. The first thing I was asked was “why should we let her come to school?”. Warning bells should have gone off in my head and I should have picked her up and left, never to come back after that statement. Dumb me, I stayed and tried to answer that question; because she’s a little girl and little girls go to school, was my response. It was decided that she would attend the kindergarten class for 1 hour once a week with me with her the whole time. Not much time was it? I had mistakenly shown the school staff the info I had about Hydranencephaly back in September and that had prepared them for a “vegetable” who couldn’t possible show any awareness of other people or interaction with her surroundings. I no longer allow that information to be shared. They have to meet her first. The first time Kayda visited the kindergarten class they started singing to her. It was a song she knew and her face lit up. They stopped singing and she let out a yell. They started to sing another song and she quieted and started smiling again. Wow!!!! said everybody. They ended up singing to her much of the hour she was there. That was a good start. One day, though, closer to the end of the year I was in the principal’s office having a meeting with her about the next year. While she was out of the room for a few minutes I noticed her file on Kayda which was open on her desk. One of the things that was underlined was “severe behavior problem”. Another flag that should have sent us running away. They never did explain to me how a child who was just a “vegetable” could have a behavior problem. She got this label because she tended to be noisy. No one seemed to stop and think that maybe Kayda’s sounds and noise were her speech and means of communicating. Continuing with warnings of things to come; the nurse came to the house one day to give me something or other. She phoned before she came and I said it wasn’t a good time as Kayda appeared to have the flu and was vomiting constantly. This was just after her first visit to the kindergarten class. The nurse said she’d come anyways. By the time she’d arrived I’d moved Kayda to the living room. She was still vomiting every 3-4 minutes and I hadn’t been able to get dressed, eat, use the washroom, etc. The nurse kept talking to me as I was holding Kayda’s head as she vomited. She kept saying “are you taking her to the doctor?” “you should take her to the doctor”. Right! I’m going to pack up a constantly vomiting child and drive 45 minutes by myself to the doctor’s office. I explained to the nurse that I thought I would stay home until she’d stopped vomiting so much and then I’d see if she needed to go to the Doctor. Of course, one dose of Gravol settled her and she was fine. Throughout the spring the school nurse came to the house a number of times to work on Kayda’s care plan. She insisted on using what had been drawn up for respite staff to use when I was unavailable. The end product was nearly 20 pages long. No wonder people were afraid to care for her.

Chapter 9: Illness

Over the course of the winter Dave, Kayda and I had gone for a number of weekend trips to various ski hills in the area. Dave skied and Kayda and I enjoyed wandering around different towns and villages. I also enjoyed the break from the regular routines. In mid February we went to a ski area fairly far away from our home. On our second or third night, we had gone to bed early. All of a sudden I woke up hearing Dave saying something unmentionable. He ran to the door just in time to see our van being driven away. It had Kayda’s tie downs, ramps, Dave’s ski equipment and a very expensive special ski for the disabled in it. We quickly learned that that area didn’t have 911. Dave ran to the office of the motel and called the police. We were very fortunate that the person who stole the van wasn’t very smart. He drove it in to town instead of heading out of the town along the highway. He was caught within 15 minutes. The only thing we lost was Kayda’s parking pass. Oh, yes, we had to buy a Club as the van could now be started with just about anything. That really spoiled our weekend. Dave did manage to take Kayda on one run in the sitski-a special ski. Dave had worked for several years teaching people with disabilities to ski. That was Kayda’s only time in a ski. He said she enjoyed it. I stayed inside enjoying my only break from her care in a long time. A few days after we got back, I woke up feeling horrible. I ached all over and felt really weak. I noticed I was short of breath just pushing Kayda’s empty chair down the hall. Every time I took a deep breath my back hurt. I thought that was ridiculous so ignored it. I figured I had the flu. Kayda chose that day to wake up with a very high temperature. She did that from time to time and each time I took off to the Dr with her to get it checked out and each time there was nothing wrong. This time was no different. By this time we’d found a really nice family doctor (actually 2 as they shared the practice) a couple of towns away from us. They were in the same building as the pediatrician we were seeing and worked out of the same hospital. After the doctors appointment we went home and Kayda seemed fine. Her temp was down and she was her usual happy self. I felt horrible. Dave was away for the weekend skiing. The next morning I woke up feeling worse and had a high temperature. I never get fevers or felt as bad as I did. Once again I assumed I had the flu. That day I was training new respite caregivers in how to care for Kayda so I asked them to do most of the work so I didn’t have to get close to her and risk her getting my bug. I spent most of the day lying on the couch while the respite people were there or on a mattress on the floor next to Kayda’s side lyer when no one was around. She was an absolute angel and was happy lying there holding my hand. I slept most of the time. In the late afternoon Dave called and I told him how sick I was. He asked me if I wanted him to come home and I said yes. As soon as he got there I went to bed. Monday morning I woke up knowing there was no way I could care for Kayda while Dave was at work. My head hurt every time I moved it, I had a high temperature, I ached all over, etc. So, I phoned the social worker. She arranged for Kayda to go to another home for a couple of days. The next day she called and said it just wasn’t working out. Miss Kayda had hollered all night and not slept and had bothered the other child in the home. I just laughed at that as I realized she knew she wasn’t the queen in that house. So, she came home and it was arranged that we’d have nurses come in to care for her. After several Doctor appointments and emergency room visits it was decided that I had an extremely severe kidney infection. I was put on iv antibiotics which meant driving to the emergency room at 5 am each day for several days as that was the only time that was quiet enough for the staff to have time. There were several others that came in at the same time. With having the nurses at home I was able to avoid a 2nd trip to the hospital each day to have the saline lock flushed. They just did it for me. I was flat on my back for a full month. During that time we had some really wonderful people come in to care for Kayda. While I was still very sick, she came down with bronchitis. We ended up in the local emergency room by ambulance very early one morning-Dave had left the night before to go to a sports competition with the disabled skiers in another part of our province. The doctor who saw Kayda was one I had had and stopped seeing because he was making major errors in my care (He prescribed a medication for Parkinsons when he meant to prescribe a medication for migraines and didn’t tell me this until a month later when I saw him for something else. Fortunately I hadn’t taken the med as it was too expensive and I wasn’t convinced it was necessary). He wanted to admit her and I said no. I was too sick myself to do the amount of care I knew would be needed from me if she was in the hospital. The nursing agency arranged to have nurses on for 24 hrs a day at home. I really didn’t trust what the doctor in the Emergency Room had said about Kayda so that afternoon I took her to see her family doctor (she was mine by then as well). She confirmed the diagnosis of Bronchitis but found he’d prescribed the wrong dose of antibiotic. Kayda recovered after a few days. That was a nightmarish time but with the help of the social workers and nurses we managed. This all started at the end of February and it was the end of May before I was able to care for Kayda by myself. Something else that we were dealing with at this time was sleep, or the lack thereof. The first little while after Kayda came to live with us she slept fine. This was probably because she was so doped up on anticonvulsants. By December this was no longer so. Most of the time she only slept every 2nd or 3rd night. When awake, both at night and the day after she screamed and giggled hysterically. This was also the time she was most active with lots of kicking and wiggling. She got into this pattern of constantly wiggling her legs, so much that the chair or sidelyer would squeak. At the beginning of December I contacted the pediatrician and asked for some help with her sleeping habits. He recommended our trying Melatonin as that treated the cause of insomnia rather than just the effect. The theory of melatonin is; Our bodies excrete the hormone melatonin in response to eyes’ perception of the day getting darker. That’s why people tend to sleep more in winter and on dreary days. People who are blind don’t get this same stimulus. At that time Melatonin was only available in Canada as part of a research study. It turned out that the Neurologist who was leading the research into using Melatonin to help children with multiple disabilities sleep, worked out of our local Children’s Hospital. Kayda saw him in March and he agreed that she was an ideal candidate for Melatonin. We started giving it to her with high hopes. After 2 nights it was clear that it wasn’t working so the Dr told us to increase the dose. After several months and on a dose of 15 mg (1 mg over sedates me) we had to admit that Melatonin wasn’t the miracle we had hoped for. We tried it again a couple of years later with the same results. The doctor said that their research was indicating that Melatonin is processed by the hypothalamus and seemed to work for everyone whose hypothalamus was intact. It appears that Kayda’s wasn’t or it wasn’t functioning well. To this date, I haven’t heard of Melatonin being effective for any child with Hydranencephaly. Each family tries it though just in case. So, without Melatonin we had to go back to treating the effect of sleeplessness, which meant trying sedatives. We started with Chloral Hydrate. That was scary. Even half the prescribed dose sedated her so much that I couldn’t tell if she was breathing and couldn’t rouse her. Then she would scream the first half of the next day. That wasn’t worth it. Finally we went back to giving her Nitrazepam to help her sleep as we knew that it had had that effect when she was on it as an anticonvulsant. There were problems with it eventually because she became accustomed to it and needed an increasing dose but in the short run it was wonderful-most of the time. She still had spells of only sleeping every 2nd or 3rd night and screaming in between. I got so tense during these times.

Chapter 8: The Miracle of Bruce

Kayda’s 5th birthday was at the beginning of December. We went all out and invited several of the children that I’d cared for before having Kayda as well as their parents. She wasn’t very well on the day of her party. She was so gurgly we had to just sit her in her chair long enough to take a couple of pictures and then lie her down again. We all had fun though. Presents were sure hard to find. What do you give a child who has never shown an awareness of anything? I did find a Disney toy that was a ball with different coloured lights and bars that played songs with only a gentle touch. It could be activated “by accident” which is what she needed. She was moving her hands more at this time though and was quite good at pushing away anything placed on her tray. I don’t think the ball really liked being tossed to the floor so many times. Then came Christmas and another gift finding challenge. I found the Disney Dancing babies toy that was voice or sound activated as well as touch activated. I also decided to get her a Fisher Price Dinoroar named Bruce. I figured that I could put it under her arm when she was lying on her side and maybe one day she’d learn to squeeze it voluntarily to hear the noise it made. Clothes and pretty stuff made up the major part of her gifts. Shortly after New years I put Bruce under her arm and for some reason put him up to her mouth. She touched him with her face, turned her head away and then back again and started to chew on his nose. That one act changed Kayda’s entire life! By the next day she had figured out how to pull Bruce to her to chew on and push him away when she wasn’t interested any longer. From that day on she started to show an awareness of individual toys and started moving her hands in what appeared to be purposeful movements. I remember one day when I was bathing her, her hands kept touching the sides of the tub. I thought they appeared purposeful but told myself I was imagining things. Doctors kept reminding me that she had “no brain” thus no awareness of her surroundings were possible. Well, I soon became convinced they were wrong and that she knew exactly what she was doing with her hands. I noticed that she liked to compare textures. She’d run her fingers over her shirt and then over a toy and do that over and over. She also started batting at things that were hung over her sidelyer. While Bruce was obviously her favourite toy she liked to feel other toys as well. He became her soother and she chomped and chewed and sucked on him all day long. She became much like a teething baby and liked to explore anything within reach with her mouth. One night when she was in bed I heard this weird sound coming from her room over the monitor. I couldn’t figure out what it was and ran down the hall expecting the worst. She was asleep, and was sucking on her tongue!!!!!! We discovered that if we strapped him near her mouth when she was in her wheelchair she would be quite happy sucking on him no matter what we were doing. We started being able to go out more as she wasn’t nearly as noisy and disruptive. Her breathing was improving as well. She’d had no illness since the beginning of December. Her breathing was clear when lying down and most of the time when sitting, especially if we were in the van. She liked van rides as long as we didn’t stop. I kept asking the social worker for either a police escort through red lights and traffic jams or a helicopter and for some reason we never got either. Before Christmas it had been decided by the OT and speech person that most of Kayda’s gurlginess was saliva rattling around in her airway. One day they observed her for nearly an hour and counted only about 2 swallows. After a couple of months chewing on Bruce and anything else she got her mouth on, we noticed she wasn’t drooling nearly as much and was swallowing. That crazy kid had taught herself to swallow as well as how to suck and chew!!!!!!!! She wasn’t supposed to be able to do any of that. I know that I got weird looks from Doctors when I’d tell them what she was doing. They thought I was totally out of touch with “reality”. That’s when I realized that with Kayda there are 2 realities: the doctors and medical tests (no brain, a vegetable) , and mine (wonderful and talented). I just kept quiet and let these pessimistic people discover for themselves how much Kayda was aware of and could do. In addition to learning to swallow, chew, suck and use her hands she was starting to move the rest of her body. I learned the hard way that she could roll. On Christmas Eve I had put her on her side lyer which was up on the couch. I think I realized once she was there that I’d forgotten something or other and went to get it. I turned my back for half a second and she rolled onto the floor. Poor Kayda! She cried just like any other child would which negated what the doctors had been telling me-she couldn’t possibly feel pain or cry from it. Shortly after Christmas she started rolling from her side to her back and on to the other side. She never quite mastered getting all the way over. She could also move on the floor by kicking her feet. I noticed too, that in the morning she was no longer in the position she’d been in the night before. She just laughed when I’d comment on that. She was such a happy girl and was so responsive to everything and everybody. She was blossoming! She still felt that her main purpose in life was to be held.

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.

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.

Chapter 5: We are a Family

Friday July 30, we brought Kayda home. We had a wonderful weekend. On the Tuesday the social worker dropped in to see how Kayda was doing to see if we really were competent to care for her. Well, when she came Kayda was happy and laughing away and obviously content. Early Wednesday morning I woke up to hear Kayda whimpering. When I went to her she was very hot to the touch. I panicked and roused Dave and we roared off to our local hospital. She was checked out and we were told she was ok at the time. Dave & I took turns supervising her so we could catch up on sleep. About mid morning she fell asleep and stayed that way no matter what we did. I checked her heart rate and it was about 40. I’d been told by her family doctor to not let her get lower than 50. So, I phoned 911 as Dave was out. She was given a further chest xray and it clearly showed pneumonia. Over the next couple of days we were shipped off to the Children’s hospital and as they didn’t have any free beds we were sent back to the local hospital. Previously I’d decided that I wanted the pediatrician who cared for Amanda & Cathy and a couple of the other children I’d cared for as Kayda’s pediatrician. However, I decided to give the pediatricin in our town a chance. The first time he walked into her room, he looked at Kayda, and said “What is the plan for this child? Do we resuscitate or don’t we?” Oh oh!!!!!!! After 5 days in hospital she came home on supplemental oxygen. A couple of days later Kayda went to spend one day with the foster family. The next day, we were called by the social worker again saying that the foster mom had filed another complaint about the unsuitability of our home for Kayda’s health. That was it for me! I’d agreed previously that Kayda could visit her frequently and that she could provide respite for her. However, one more complaint was too much for me to deal with. I phoned her and told her that she’d blown it. There would be no further phone calls or visits. To this day, over 6 years later we have had no contact with the foster mom. We did meet the family of one of the other children that had been in her home a while later, and learned that this girl had also been taken out of the foster home shortly after Kayda left by her family who had major concerns about the care she’d been receiving.

Chapter 4: The Battle Begins

After 3 weeks the Foster Family Kayda lived with returned. They had been told that a permanent home was being sought for her as there were 2 near adult children in this foster home and the mother was older. But...only a couple of months earlier the social worker had the foster mom sign a 1 year contract for her care. So, when they came back and were told that not only had a home been found for Kayda but that we had already met her and had finished-more or less-our training to care for her, they were not happy! We had a couple of team meetings in their home. Kayda was always sitting by herself in her chair in a room. The foster mom wasn’t letting anyone take “her” girl if she didn’t think they could care for her. It was decided that Kayda would stay in the foster home one more month so that I could become more familiar with her day to day care. I resigned from my job as a preschool teacher at the end of June and looked forward to bringing Kayda home at the end of July. I went frequently to her foster home to be trained by the foster mom. That was when I learned there were many problems there. The foster mom was convinced Kayda was being taken away from her because she refused to carry a letter with her stating that Kayda was a “no code”. She didn’t realize that the way she was suctioning her was felt to be a major risk and a major factor in all of the pneumonias she’d had over the last few months. Or, the fact that with 2 other multiply handicapped children, there was no one to stay with Kayda when she was in hospital and that the intense care she needed wasn’t possible. But, the foster mom was supposed to train me. The hardest thing was the suctioning as I’d already been trained and passed on the correct method. The foster mom basically went into Kayda’s mouth and used the entire length of the suction catheter. She most likely was getting into her stomach, drawing up stomach contents, and depositing them in her lungs. I remember one day when I wasn’t going deep enough for her and she grabbed the suction catheter from my hand and shoved it down. Poor Kayda. We later learned too that she wasn’t administering Kayda’s asthma medication properly. One day when Kayda came to our house for a visit the foster mom picked her up. A few days later we were informed by Karen that we had to have an assessment done on our house as the foster mom complained that it wasn’t suitable for Kayda. We lived in a small, older house that was below sea level and therefore somewhat damp. This was the first of several such demands by the foster mom. Near the end of July it was time for Kayda to come for a weekend visit. At that time Kayda was always congested and was receiving Ventolin via a nebulizer 4-6 times a day. The foster mom had sent me three vials of Ventolin only. She was also fed via pump slowly several times a day. The feeding pump was bought as a way to prevent further aspiration. The foster mom dropped her off. After a short while, her feeding pump started beeping “low bat”. I hunted through her stuff and low and behold no battery charger! So, on a hot day in July I had to pack Kayda up in our tiny car and go to the foster home to get it. That may not sound like a big deal, however it involved going on a tiny ferry with over an hour line up each way with no air conditioning. I had to stop several times to suction Kayda. Things went ok overnight. It was so nice having her there. Mid afternoon on Saturday I used up the last Ventolin. Kayda got increasingly gurgly and wheezy. I just didn’t know what to do and without the Ventolin my hands were tied. So, in the early evening I had to phone the foster mom. She said she was coming to get her. While I waited I laid Kayda down on a mat. By the time she arrived Kayda’s breathing was much better. I commented on that to the foster mom and she said “she’s always better when lying down”. In my head I wondered why Kayda was in her chair all day? On Monday I learned that the foster mom had phoned the social worker and told her that we weren’t competent enough to care for Kayda. No one would be competent if they weren’t given adequate equipment or medications. Despite this, plans went ahead for us to bring Kayda home for good on the Friday.