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.