Wednesday, April 3, 2013

Chapter 31: Respite and a Decision with Unseen Consequences

Throughout the whole time Kayda had lived with us, getting overnight reliable, consistent respite was almost impossible. For the first few years we were lucky if we got 2 or 3 weekends free in a year.

Finally in early 1997 a new respite home for children with medical challenges opened in our area. It was run by the same organization that Dave worked for. Even though it was against the policy of the Associate Family program to have children cared for in group care situations it was decided that Kayda could go to this home.

Her first weekend there was the weekend before her casts came off. In her usual fashion, she came down with a cold the morning of the day she was to go to respite. After numerous conversations with the nurse in charge it was decided she could still come. Precautions always had to be taken as 2 children were cared for at a time in this home. Once Kayda was dropped off and settled in Dave & went away for the weekend. We rented a condo in the town near where he had a season pass for skiing. On Saturday Dave went skiing and I stayed in the condo and just relaxed. There were no phones in the condo so I had to walk a fair distance to a pay phone to check on Kayda. She was definitely sick but seemed to be doing ok.

On Sunday morning we checked out and I went to the ski hill with Dave. I just sat in the lodge and read and did cross stitch. After awhile I noticed Dave coming in to the lodge. He didn’t look good. It turns out that he was hit by a snow boarder going way too fast. He had been examined by the ski patrol and had rib tenderness and a sore wrist. They didn’t think anything was broken but suggested he get checked out by a Dr when we got home. When I’d phoned to see how Kayda was doing that morning they told me that she had a fever and seemed to be having a lot of trouble breathing. From that information, I figured that we would likely be taking off to the hospital as soon as we got home.

Despite his sore wrist and ribs Dave drove home. We were in our old van which had no power steering so driving wasn’t easy. Our other van was having trouble with the starter. Pick up time at the respite home was 3 pm. We didn’t get home until well after 4. I was very conscious of the fact that the people at the respite home worked with Dave and felt bad about being late. Dave felt he needed to go to the hospital so I took the old van while he tried to get the other one started. Before we’d gone away I’d arranged to have a respite person come in on the Sunday evening. Before dashing off to get Kayda I gave her a list of things to pack as I was still sure we’d have to take her to the hospital that evening. I felt bad about Dave being injured but really felt that Kayda was my priority. I learned later that this simple decision had far reaching consequences.
It turned out that Kayda really wasn’t doing too badly. She always sounded much sicker than she actually was. Having the oxymeter made a real difference. I could see that although her oxygen level was a bit low she was above her lowest limits. Dave’s wrist and ribs were just bruised not broken.

The next day, as planned we went back to the hospital to have Kayda’s casts removed. Because her physio had gone so much better with her in hospital the last time, it was decided to do the same. Again she did much better having her initial physio at the hospital with the nice big bathtub.

Chest xrays and tests all showed that Kayda’s lungs were fine and that she just had a cold and upper airway congestion. On that visit we had a real “gem” of a student nurse assigned to us. As this was a teaching hospital and Kayda and her needs were thought to be rare we were always assigned students. This student actually argued with our Family Dr about Kayda’s condition. The student was sure Kayda was gravely ill and her lungs were badly congested even though the Dr said that no, it was just upper airway noise. The student felt that deep suctioning was needed to clear Kayda’s airway. I asked her if she’d ever suctioned nasally before. She said no, but that she needed to practice. “You’ll practice on someone else” I said. That was often an issue when Kayda was in the hospital. The only effective way to suction her was nasally but I found that even the RNs didn’t do it gently or effectively enough (for me anyways) so I usually did it myself. There was one physiotherapist that was good at deep suctioning. I always stayed with her in hospital and that was one of the things I insisted on; that I or a trained caregiver do any suctioning.

Chapter 30: Here We Go Again

Because it took so long for the social worker to sign the consent form for Kayda’s surgery, it was winter when the surgery could be scheduled. I decided to keep Kayda out of school for 2 weeks before the surgery to cut down on the risk of her being sick. Well, she finished school on the Friday 2 weeks before surgery. Sunday night she came down with another bad cold. Crazy kid!!!! Once again, surgery was in doubt. It was decided that she should see the surgeon before being admitted to see if he thought it was safe for her to have surgery. Good plan! We got to the hospital at the designated time only to find that the surgeon had forgotten. So, she was admitted without a check up. She was mostly recovered from her cold. She was just a little gurgly but her oxygen level was fine. The anesthetist came to see her and right away he was hesitant to do the surgery. He said that he wasn’t so much worried about how she would do during surgery but after. When a child isn’t totally well and undergoes prolonged anesthetic such as Kayda was going to have, they are much more at risk for complications afterwards. I didn’t want to put her at risk but I felt she was ok. So, the pediatrician on call came and examined her. He wasn’t her regular pediatrician but had cared for her a number of times when she’d been ill. I trusted his judgment when he said he thought it was safe to do surgery. The anesthetist agreed to go ahead.

I was still scared. I did manage to go out for the first couple of hours of her surgery. We always went to the same mall. I found a beautiful dress and some ear rings that I thought would be nice for Kayda to wear on her way home from the hospital, but I couldn’t bring myself to buy them. I was too afraid that she wouldn’t survive the surgery. We didn’t stay out long but returned to the waiting room to do just that. Late in the afternoon the surgeon came out to say that he was done, that she had done fine and they were just putting on the casts and would be going to the recovery room soon. We went in and saw her as soon as possible and once again her face was swollen and white and the casts looked so big. It was decided to keep her in the recovery room over night just to keep an eye on her breathing. Dave left in the early evening and as Kayda was still asleep up in recovery and as I was exhausted I went to sleep quite early. At 11, the phone rang. It was the nurse in recovery saying that Kayda was awake and restless. They said that she seemed to respond when they said “do you want mom to come see you?”, so could I please come up. I hurried up and then spent the next several hours sitting with her and talking quietly to her and to the nurses. She was quite restless and I said that she was in pain, so she was given pain medicine and immediately settled down.

It was always strange talking to nurses who didn’t know about her condition. Her diagnosis on her chart said Spastic quadriplegia. Well, the nurse sitting with Kayda when I went in couldn’t understand how she had quadriplegia as she’d seen Kayda move her feet in the casts. I had to explain about her condition. 

Finally around 2 am Kayda was asleep and resting peacefully so I went back to Pediatrics to sleep. But, when I got there, all our stuff was in the hall. Our room had been given to another child. I ended up sleeping on the floor in the family lounge. When I got up around 6:30, I went to the nurses station to see if they knew what time Kayda would be coming down to the floor. They said she wouldn’t be coming down as planned as they were having trouble with her sodium level being really high. I sort of laughed, and said there was nothing to worry about as her sodium level always went up when she was ill. So, I went back to the floor where the recovery room was. I went to the door and using the intercom asked if I could come in to see Kayda. They replied that it was shift change and could I come back in half an hour. So, I went back to the waiting area. While sitting there I heard our pediatrician being paged. “It’s for someone else” I told myself. Every 20 minutes for  2 hours I’d go up to the door and ask to come in. Each time I was told to wait a bit longer as they were busy with her. I remember that there was a lady in the waiting area whose husband was undergoing surgery for a possible cancerous growth. We talked a bit but I started getting panicky. I thought of the worst possible things. Finally, I couldn’t take any more. I went back to the door and pleaded for someone to tell me what was going on. The pediatrician came out. Yes, the page for him had been about Kayda. He said “well it looks like she had diabetes Insipidus”. I, again sort of laughed to myself because he had always said there was no way she could possibly have it. (this diagnosis had been suggested before she came to stay with me due to her frequent high sodium levels). I thought it was no big deal. We’d just get her sodium level down, right?

The pediatrician explained that along with a very high sodium level, she had uncontrolled urine output. That was another factor in diabetes Insipidus. He explained that despite medication they were having great problems getting her condition stabilized. He said she was doing a bit better but would have to have one to one nursing care. He let me see her and she didn’t look too bad to me. They had me wait a little longer in the waiting room. In the meantime, the lady waiting there was told that the tumor in her husband was benign and he would be fine. Finally the pediatrician said that Kayda was stable and that a special duty nurse would be in at noon and she would then be transferred back to pediatrics. Fortunately the child that had been in her room had been discharged so she had a room to go back to. Once I heard that I relaxed and went out. I went and bought her the dress and ear rings I’d seen the day before.

And thus began almost 3 weeks of ups and downs and constant watching of the level in her catheter bag. The doctors really didn’t know what to do as diabetes Insipidus is rare. They would give her the medication for DI called DDAVP and that would slow her urine output and her sodium level would go down too low. But what we realized is that they continued to keep her iv going so she was getting too much fluid. That took several days and several more crisis before that was figured out. So, when the sodium level went low, they’d restrict fluids so her urine output would decrease, but then her sodium level would get high again. Believe me, I learned far more than I ever wanted to know about sodium and urine output.

Kayda’s hip surgery was on February 3. On the night of February 13 I came back to her room after having been out for dinner with Dave. There was all kinds of activity in her room. The nurse told me that her sodium level was really high again and that they needed to bring it down. They planned to flood her with fluids; 4 litres in 2 hours. This was started around 10 pm. Around 11, I decided to try and get a bit of sleep. I had a cot next to her bed. Before I could fall asleep, Kayda started fussing. I went over to her and gave her a hug as best I could with all the ivs, tubes and casts. Every time I left her side she’d start to fuss. At midnight when the nurse did her vitals check Kayda was wheezing a little bit. We decided to give an extra dose of ventolin. The wheezing continued to increase. The nurse brought in an oxymeter and heart monitor. They showed that her oxygen level was decreasing rapidly. We had to keep turning it up. Her breathing got noisier and noisier. Kayda was awake and scared though. Every time I left her side or moved my hand she’d start to fuss so I stayed right there talking to her. The nurse kept bringing in more and more pieces of equipment to monitor her condition. We had to go to the high concentration oxygen tubing and had to keep turning it up. The resident on that night came in and out of the room. Kayda had blood work done every 2 hours all night. The resident just sat with us and watched Kayda struggle and waited for blood test results.

Throughout the preceding days the doctors on the floor (residents and several pediatricians) disagreed with Kayda’s pediatrician on how she should be treated. They wanted to just give her the DDAVP to slow her urine output. But her ped, didn’t think she needed it and felt that she was so sensitive to the DDAVP that she wouldn’t be able to handle getting any fluid-ie; wouldn’t be able to get enough formula into her. So, that night as we waited and watched, the resident was debating whether or not to give the DDAVP. She knew that Kayda’s ped didn’t want it given.

By 2 am her sodium level was only slightly lower than when we started treating her and she was in big trouble. I was going over in my head how to do CPR. The crash cart was brought to just outside her room. The nursing supervisor for the whole hospital came in and out of the room. The resident said to stop the Ivs and to give her lasix. Right away she started to put out more urine and over a very short period of time she started to improve. We were able to take gradually take away pieces of equipment. Throughout all of this Kayda was awake and had to have my arms around her hugging her closely. She gradually relaxed and by about 4 am finally fell asleep. It was Valentine’s Day.

I phoned Dave at about 6 to tell him what had happened over night and suggested that he might want to not go to work that day. He agreed. He arrived a couple of hours later with a big box of long stemmed roses for the 2 of us. At some point in the previous days I had broken my glasses. I think I had taped them together but it just wasn’t working well. So, when Dave arrived, as Kayda was still asleep I went out to the mall to where there was a 1 hour glasses place. The sales person tried to talk to me about what a beautiful day it was or some such nonsense. I just looked at her and said “my daughter almost died this morning and is still very sick in hospital” She shut up and apologized and agreed to have my glasses ready in an hour.

While I wandered around in a fog waiting for my glasses, the cell phone rang. It was Dave. Kayda was awake. In the background I could hear her giving this high pitched whining type of cry. It was a horrible sound and she only made it when she was feeling at her worst. And the only way to get it to stop was for me to be holding her. I was 20 minutes away from the hospital and had to wait for my glasses. That whole time I just ached knowing that I had a crying little girl who needed her mommy waiting for me.

When I got back to the hospital Kayda was giving that horrible cry and was moving her arms and hands sort of compulsively. It was as though she had to move them, but wasn’t happy, she was driven. She settled more as long as I stayed right with her with my arms around her in a half hug.

The pediatrician came in some point in that foggy day and showed his wonderful bedside manner. He said “well, we just have to accept that Kayda has a higher than normal sodium level”. I asked if that would be harmful for her? Well, he said, “the most common side effect of a high sodium level is brain swelling. As she has no brain, I guess it doesn’t matter”.  It did turn out that no DDAVP was the correct treatment for Kayda.

That poor girl had such a tough time. She had a latex catheter in her for almost 3 weeks. At one point I could see that her urine output was getting cloudy and she seemed to be having bladder cramps. As the last time she’d had a catheter in, she’d gotten a bladder infection (her first hip surgery) I knew that that’s what she had now. I told the doctors and they took a urine sample. However, they had to wait 3 days for the culture to grow. I  knew she was in agony but they told me she was “asymptomatic” as she had no fever. I muttered not so nice things about the people who were making her wait through her pain.

During those long weeks, she decided that I had to be with her ALL the time. But, I was tired and a couple of days after Valentine’s day I had one of her respite people come and stay with her so I could go home for 24 hours. How much I appreciated that break! When I got back to the hospital the next day it was time for her nebulizer treatment. As usual I offered to do it. She was all smiles and as happy as could be. The respiratory technician said “gee, she wasn’t like that when I was in before. She almost growled at me”. It turned out that the whole time I was gone, little miss Kayda was in a snit about me being gone. She refused to smile. She fussed and was generally miserable. It was nice to be missed. I also felt a sense of triumph in that this little girl was so able to express her wishes and opinions.

Finally, almost 3 weeks after she was admitted, Kayda came home. And, despite the fact that the pediatrician had muttered throughout her whole hospital stay that it would be impossible to manage her sodium level and urine output at home, it was totally under control by the time we left the hospital. She still put out a lot more fluid than she took in, but with weighing diapers I was able to keep on top of it and if she put out too much urine I’d just give her more fluids.

I am now firmly convinced that the reason she had all the problems she did after surgery was that she had been ill just before and she wasn’t strong enough to withstand the trauma of the surgery. The fact that it was winter didn’t help. I now tell families to make sure that their child is 100% healthy before any surgery. The anesthetist had been right. We should not have gone ahead with the surgery. It almost cost her life.

Chapter 29: Our Best Christmas Ever

Kayda gave us a special present long before Christmas day. Dave put the tree up while Kayda and I were in the kitchen having dinner. When we went back into the living room Kayda noticed the tree-she looked at it, and then looked away and then back at it again. It had no lights, no nothing!!!! She knew that something different was in the living room.  This was the first time she had ever clearly seen something. I of course ran out and bought all kinds of things for her to look at. She also loved touching the tree. I always left a spot with unbreakable ornaments that was for her to touch and play with. I have wonderful pictures of her reaching out and touching and clearly looking at and seeing the Christmas tree.

During the Christmas season she revealed one more “quirk” of her personality in that she loved opera. Pavarotti was her favorite but she was enthralled with any opera singer. At this time she went into her stander every day for a couple of hours. Her favorite thing to do in the stander was to listen to opera.

By Christmas Kayda was healthy once again. She was happy and very comfortable now in her leg braces. She was animated and alert and was eating almost all her solids orally. She just got fluids and medications through her tube. Because she’d been ill her previous two Christmases, having her healthy that year was very special. Something else that was special that year was that it was a “white Christmas”. Many people take having snow at Christmas for granted but where we live it’s very rare. There was about a foot of snow on the ground Christmas day. Kayda loved her gifts, especially a Playskool “computer” that made all kinds of noises and lit up when buttons were pushed. She also got to eat Turkey dinner with all the trimmings (pureed of course). I was oh so grateful to have her healthy. Having a child who is sick so often makes you really appreciate the good and healthy times.

On the day after Christmas Dave left to go Heli and “Cat” skiing in the interior of the province with a friend. That day it started to snow. And it continued and continued and continued. By the 28th of December it had snowed so much that all roads into and out of our area were closed. Thousands of people were stranded in their cars on the highways. Dave managed to get a bus from the far east of the province as far as the community where my Dad lived but could go no farther. He stayed with my Dad & Step Mother for 2 days.

I love the snow, but know how terribly impractical it is with a child like Kayda. We lived out in the country in a very hilly area. I just prayed that Kayda would stay healthy as I knew there was no way I could go anywhere in our van with her. The thought of phoning an ambulance to take her to the Dr was not pleasant. And, much of that time, the ambulance wouldn’t have been able to make it to our house anyways. But, she was good. We enjoyed being in our safe cozy house.

Something that really helped me feel in contact with people during those days, was the fact that I’d discovered email and mailing lists the previous year. By Christmas time I had a number of friends that I corresponded with. I had found this wonderful list called “Our Kids”. I had always loved reading stories about children with special needs and here I now had the opportunity to get to know the stories of hundreds of children with special needs. What a neat feeling that was.

Finally, on New Years Eve, the roads opened just long enough for Dave to take a bus home. By that time, as is usual in our area, rain had washed all the snow away. All in all, it had been a special Christmas.

Chapter 28: Fall, Casts off and the Government

After trying to get a hold of the social worker all summer without any success, it was September and time for Kayda’s casts to come off. Because no physio had been set up for her at home, the surgeon decided that Kayda should be admitted to the hospital for 5 days after the casts were off for physio. This simple act caused months of illness and hardship for my poor girl.

Over all, admitting her to hospital when the casts came off was a good move. This time, I knew the pain she’d face as soon as the casts were lifted off of her legs and had given Tylenol ahead of time. I also knew to hold her legs down and keep them straight. The surgeon whipped her legs around to check her range of motion which clearly hurt but other than that, this time around wasn’t nearly as bad as the first. And, all I had to do was wheel her chair to the elevator and then to her room rather than taking her on a long bumpy drive. Once again, though, Kayda was placed in the “Nursery”. This time there were 4 or 5 babies in there, all with viral pneumonia. You know what one year olds are like; there’s no keeping them in their own areas. The children on either side of Kayda had pneumonia. The other thing that hung over that stay in hospital was that the surgeon had told me that her right hip was now dislocated. Snipping the muscles at the top of her legs in the first surgery hadn’t been enough to keep it in place. So, she would have to have the other hip reconstructed too. The surgeon wanted it done as soon as possible. He gave me the surgery consent form to give to the social worker; yes the same social worker who didn’t return calls all summer.

We started her physio the day after the casts came off. We learned that she did much better with her range of motion exercises in a warm bath. As her legs were very tender and she was nervous about having them moved we decided that she’d be better off just in a large bathtub rather than the hydrotherapy pool in the hospital. We would be able to control the waves that way. She did so much better in the warm water. We took her into the tub twice every day. Because the surgeon was still worried about her left hip, he asked that her old Scottish Rite brace be extended on the left side to include her AFO. So, basically she ended up in the same position as she was in casts. This became like a removable cast. Gee I hated that thing. But at least she could bend at the knee so could sit in a regular wheelchair again although the seat had to be extra wide as her legs were still abducted. Once again, I knew I would be kept busy making extra wide skirts for her to wear.

Her casts came off on a Monday. The new brace and the adaptations to her chair were done by Sunday. So, we went home Sunday afternoon. Sunday night she sneezed twice. “Oh no” I said. Sure enough, by the time I got up in the morning Kayda was very sick. At that time we didn’t have the oxymeter at home so I was just guessing how she was doing. I did my usual “do I panic yet?” routine all morning. The physio that had finally been arranged to come to the house to do her post op remobilization therapy came at noon. By that time Kayda was in bad shape and I was busy stuffing clothes and equipment into bags in preparation to leave for the hospital. Her legs had been so sore that morning that I didn’t even put pants on her. I just put on a long shirt and her diaper under her brace. The physio looked at her and was really concerned. It turned out that she had been the physio for a couple of the children I’d cared for when I did in home support care before I had Kayda. It was always nice seeing old trusted friends.

Kayda rallied a bit in the afternoon so we stayed home. But, by 5 I had given her ventolin several times and it just wasn’t working so I called the ambulance. By 11 that night she was wheeled back onto the same floor she’d been discharged from 30 hrs earlier. And, yes, she had viral pneumonia. That one bout of pneumonia weakened her immune system enough that she had one illness after another all Fall. We got the oxymeter and found that even when she sounded bad her oxygen level was ok so she stayed home most of the time. But, what that meant is that ALL of her care was my responsibility. The Doctors wanted her to have Ventolin by nebulizer every 4 hours around the clock as well as Pulmicort 4 times a day by nebulizer and 2 hours of chest physio daily. I think I went 6 weeks without sleeping more than 3 hours at a time.

Throughout the Fall and through all Kayda’s illnesses we kept trying to get a hold of the social worker to sign the consent for Kayda’s hip surgery without success. Our service coordinator had her supervisor go to the legal guardian’s supervisor even and still we couldn’t contact her. Finally, in November I went to a workshop that the legal guardian also attended. I ended up taking Kayda too as I really wanted to attend the workshop and couldn’t find a sitter. So, as soon as I saw “B” (legal guardian) I whipped out the consent and gave it to her and stood next to her until she signed it. Then I tucked it carefully away.

By the time the Christmas holidays came around Kayda had been at school just 9 days. In September, as recommended by the inclusion team the previous spring she’d been placed in a grade 3 class. Early in December the principal phoned me. He started explaining that due to class sizes and teachers contracts and such, he would like to move Kayda and her aide back into a grade 2 class after Christmas. Would it be all right with me? He asked. “Would she be with her friends from grade 1?” I asked. “Yes” he said. Of course I gave my consent. Once again this principal showed that he knew how to do what was best for the school and for individual students rather than what outsiders thought was best. We never discussed the fact that Kayda was a year behind age wise again.

Chapter 27: The Summer in Casts

That summer I was determined to keep Kayda busy and out and about in the hopes that she’d sleep better. She never slept well but, it was always worse when she wasn’t going to school. So, I tried to take her on outings every other day; usually accompanied by her protests as she liked staying at home. We went all over the place; to various beaches, hikes in local parks, to a large Game Farm, to the Highland games and even to a concert with the Lipizzaner Stallions.

Kayda loved the Highland Games. We arrived around noon after a 45 minute drive. Remember Kayda had huge casts on both legs with a bar in between her legs; it was summer and it was hot. We wandered all over the grounds listening to the various groups playing. I noticed that every time she’d hear someone playing bagpipes she’d turn her head towards them and get this delighted look on her face. After a couple of hours there, I was concerned that Kayda needed a position change (I could change her diaper without too much trouble) and I knew I couldn’t put her on the ground and then pick her up again. So, I figured we should be heading home. Well, at that time various pipe bands were practicing to participate in the competitions. We’d listen to one band play, and then when they were finished, I’d say “ok we’re going now” and start to leave, then another band would start to play and Kayda’s face would light up and we’d have to go listen to that band. This went on for a couple of hours. This little girl who was supposed to be a “vegetable” and was in hot uncomfortable casts let me know in no uncertain way that she loved the bagpipes and wanted to hear as much as she could.

The highlight of the summer though was a trip to the interior of the province to stay in a cabin by a lake. The day of Kayda’s surgery my husband had arranged to sell his small sailboat to the family of one of Kayda’s classmates for a sum, plus a week at their cabin on this lake. I managed to find a teenager who was willing to come on our holiday with us to help with Kayda. She was the daughter of a lady I had worked with years earlier when I worked in a long term care facility for multiply challenged children and adults (where Dave currently worked).

Dave wanted to get the house painted before we left on our holidays so we agreed that Kayda, Melissa (our helper), our over active dog Pepe and myself would go up on the Saturday and then Dave would come by bus Monday night. We loaded everything into the van. As anyone with a child with special needs knows, going on a holiday with the child is no easy matter. No one suitcase per person trip at all. So, the van was VERY loaded. The trip itself wasn’t bad. It took us about 6 hours to get there. The cabin where we were staying was on a lake about 40 minutes off a main road. There were no businesses at all in the development where the cabin was. We arrived and located the cabin. I went and tried to unlock the door only to find that we had been given the wrong key!!!!!! Here we were, in the middle of nowhere, with a child in casts and multiple needs, a teenager I barely knew and our dog, and me all by ourselves. I called Dave, but he was no help really. I was picturing having to bang the door down or something. Finally Melissa found a tiny window that was open. She was small enough to crawl through it and was able to open the door. The keys for the door were sitting on the kitchen table; we had been given the keys to unlock the chain that was around the boats that were under the cabin.

We had a really good week, although Kayda objected to being away from home. She was only quiet and happy if she was inside the cabin, lying on the couch, playing with toys and listening to stories just like she did at home. Melissa and I took turns caring for her so we both got lots of sun tan and rest time. The cabin was right next to the lake which was really nice. The one time Kayda was happy outside was one night when Dave & Melissa took her and Pepe for a short ride in a row boat. It always felt good when we could do “normal” things with Kayda.

Throughout the summer, our social worker and I had been trying to contact the social worker who was Kayda’s legal guardian at the time to make sure that there was funding for physio for her after the casts came off. Not once, in all of the 3 ½ months that the casts were on, did this woman return our calls. This isn’t to say anything bad about the social worker. She was merely overwhelmed with her caseload.

We ended the summer with Kayda spending a week at Melissa’s home while Dave, my Mom who was visiting from Ottawa, and I went on a holiday. We had a good time away. The highlight of the trip for me was that Dave and I took a couple of days and went to the island where my Grandparents had had a summer home years earlier. I spent several whole summers there as a child and hadn’t been back in 30 years. It was so nice to see everything again. We even rented a row boat from the guest Farm where I had stayed as a six year old. Of course all the people I’d known were gone. We were constantly going on those 2 days as I wanted to see every single beach that I remembered going to. We stayed in a lovely bed and breakfast not far from where my Grandparents had lived.

Chapter 26: Surgery.....Again!

Surgery…Again!
The day after I was told she would need more surgery, Kayda ended up in the hospital with another cold and pneumonia. So surgery was postponed a couple of weeks. In the mean time she wore her brace 24 hrs a day. Surgery this time, was much simpler and only took an hour and a half. I had some time of panic though as the surgeon didn’t come out to talk to me. My panic grew as it got longer and longer past the 1 ½ mark. I finally went up to the nurse outside the OR and asked about Kayda only to find that she was already in the recovery room. The surgeon hadn’t been able to find me. I still don’t know what happened as I’d been in the OR waiting room the entire time except for a short bathroom break. And, even then, a friend was there and she never saw the surgeon.

Even though the surgery itself wasn’t as bad as the first one, it still caused big problems for Kayda. Once again, every tiny noise caused her to go into horrible spasms. This time we hadn’t gotten a private room (they cost extra and for some reason the social worker didn’t think it was necessary this time) and she was in a large open room where all the babies were put. So, needless to say there was quite a bit of noise. My poor girl. She also had all the same problems of not being able to keep food down for days and days.

A few days after surgery when the surgeon came to examine her I asked him about how long she’d be in casts this time. As the planned time to take them off came right around when we’d planned holidays I asked him if she could have them on a couple of weeks longer. He looked at me, thought for a minute, and then said “why don’t we leave them on for 3 months?” Three months!!!!!! This was May, that meant she would be in casts ALL summer! He said he wanted to make sure that her hip stayed in place this time. This time her legs were spread wider apart and her left leg was angled in. But…we soon found out that we couldn’t fit through many doors. I spoke to the Orthopedic resident about it and he said “ we tried different positions for her leg while she was on the operating table and this was the position it was most stable in.” In other words; “who cares if she can’t go through doors, her hip is stable anyways”. I spent a lot of time muttering that summer about Doctors who put children in casts like that should be the ones who have to get them through doors and take them on outings.

One thing that was better this time though, was that we had the seating clinic team come right to our house to adapt Kayda’s wheelchair. They took one look at her old chair and said “why can’t we use that?” That meant no ugly borrowed adult chair with a reclining back. They just added a platform to her old chair and adjusted the back to the angle the surgeon wanted her kept at. We did have a little problem when we measured all our doors and told the technician the maximum width for the platform and he then came back hours later with a platform that was 2 inches too wide!!!! Life is never simple is it?

Chapter 25: Birthday Parties and Friends

Kayda’s whole year wasn’t totally taken up with hip problems and casts. She was having a wonderful year in school. I had learned as a preschool teacher that one way to tell if a child with special needs was really fitting in and being accepted by his or her peers was if they got invited to birthday parties or not. Well, that year Kayda had several birthday party invitations.

At the first party she went to, as it was just before Easter, the children had an Easter egg hunt. When the little girl who the party was for was planning the party with her mother (this child was only turning 7) she knew that Kayda couldn’t participate in the hunt as their house was on several levels and it just wasn’t physically possible. So, she insisted on buying Kayda a beautiful soft stuffed bunny. The tag said that his name was Bud so that’s what we called him. He later became one of Kayda’s prime security items. A simple gesture made by a tiny child that brought so much comfort and pleasure to Kayda for many years. It was so nice for her to be part of these special days with her friends from school. One of the parties was for a boy and only Kayda and one other girl went to it. That was quite a compliment. Another party was a princess party. At that time Kayda’s favorite story was Thumbelina. I can still see her sitting absolutely enthralled as the mother of the girl whose birthday it was read Thumbelina to all the children. These were all seemingly little gestures but they meant so much to me to see Kayda included as part of a group. That year, inclusion did truly work.

In May (right before we found out about her needing more hip surgery) the inclusion team that had been contacted during her horrible first year in grade 1 came for a visit. Kayda was very animated and responsive during their visit and they could see right away how much she communicated through her eyes. They brought something called a Big Mack. It looked like the big red switch they’d been trying to get Kayda to use at the first school. But, this switch could talk. You could speak into it and record a short message and then every time Kayda activated it, you would hear the message. This “talking switch” played a very important role in Kayda’s life over the years. The inclusion team had a ton of good suggestions on how to make Kayda’s time at school meaningful for her.

The one thing that came out of the meeting with the inclusion team that I didn’t like, was that they thought she should be with her age appropriate peers; ie; that the next year she should go to grade 3 not grade 2. The principal agreed with them. I let him know I wasn’t happy with that plan. Kayda’s birthday was in December and the cut off was the end of December so she was almost supposed to be in the earlier grade. With her cognitive level she really needed to be with younger children. But, it wasn’t my school or my responsibility to make those decisions. I gave the principal my opinion and then just left it with him.

Chapter 24: The Casts Come Off, A New Nightmare

We’d all become quite accustomed to the casts. But, after 6 weeks it was time for them to come off. Oh what a horrible learning experience I faced. We got to the cast clinic at the hospital where she’d had the surgery. As the casts came away I discovered that she had a 6 inch incision on the thigh of her left leg (it was her left hip that was reconstructed) that none of us knew about. I do remember while she was still in the hospital that one day I’d pulled a whole bunch of wet gauze from around her cast without knowing where it came from. Now we knew. At the bottom of the incision was a one inch very open section of the wound. Understandably the inside of the cast was a mess. When I was first told about the surgery I was told that she would be in casts for 6-8 weeks and then wear her casts or a brace at night for 6-8 months. That sounds simple enough doesn’t it?

What I didn’t realize is that her legs were still very spastic and the minute the control of the casts was removed her legs sprung up and outward. Just think of what it feels like if you’ve been sitting in one position or on a limb for too long. Well, Kayda’s legs had been held in one position for 6 weeks. Immediately I could see how incredibly painful all this was for her. Every movement caused her to wince and scream. While at the cast clinic we were given a triangular pillow to use between her legs until her brace was made as the cast was in too bad condition to be used. She was also measured for a brace. I said to the surgeon “she’ll just wear this at night, right” He said “no 24 hrs a day to start with”. I figured that once the physiotherapist had worked a few days with her we’d be able to have her without the brace during the day. I was told that the brace would be ready in a few days and it would be sent to our house. I really had not thought through what taking the casts off would mean to Kayda. By this time it was the end of October and quite cold and here I was taking this child outside in just a dress when her legs had been covered up all that time. They gave me a blanket to wrap around her legs on the way home. It was rush hour and the traffic was very slow. Kayda cried and whimpered the entire way home. She felt every single bump in the road and every time the van sped up or slowed down. Somehow we got home and I settled her for the night; with lots of Tylenol of course.

I remember very little of the rest of the week, until Friday. That was likely the most difficult day Kayda had ever experienced in her life. Our physio therapist came over around 11 for the first physio session. Right away she asked me if I’d made an appointment with the seating clinic to have Kayda’s wheelchair adapted for her brace. I said, “no, she’ll be able to sit in her old chair soon as she won’t need the brace”. Janet (the physio) looked at me and said “Barb, she will be wearing that brace 24 hrs a day for the next 6 months.” I didn’t believe her. NOONE had ever even hinted about this possibility. Janet phoned the surgeon and confirmed that she was to be in the brace 24 hrs a day for the next 3-6 months. So Janet got busy and managed to arrange with the seating clinic (in the nearby city) for them to see us that day to adapt the chair. She also managed to get a hold of the brace maker and trace where the brace was in the postal/courier system. She managed to get it rerouted directly to us as fast as possible. In between all these phone calls we gave Kayda her initial physio session in a warm bath. It was horrible.  The tiniest movement of her legs caused excruciating pain. All of a sudden the people from the seating clinic phoned and gave us an earlier appointment. That meant I had to rush to get poor Kayda out of the tub and ready to leave. Just as we were leaving the brace arrived. I put it on her. It was called a “Scottish Rite” brace. It kept her legs apart with a bar in the middle. Then we left for the hospital; a trip that would normally take well over an hour.

I don’t think I’ve ever had such a horrible trip in my entire life. Kayda hardly ever cried never mind screamed. But as I drove she screamed in horrible pain. I can still remember thinking, that I now understood how a parent could think that there was no quality to their child’s life and then take their life. At that time, there was only total misery for Kayda. I made it to the hospital in just over half an hour. When I got there, I told the staff that they weren’t doing anything with her, nor was I taking her home until she was given something for the pain. They managed to get a hold of the Dr on call (this was a rehab hospital not an acute care one so the Dr wasn’t always in the building). She gave Kayda a shot of something and she slowly relaxed.

Our seating person decided that rather than adapt Kayda’s own wheelchair that they would just put a platform to support her legs on the rented reclining chair. I hated that chair and the platform with a passion. It was so ugly.

Over the next few days Kayda continued to be in horrible pain and I just kept giving her Tylenol and sedation so that she could sleep and not feel the pain. Very gradually her pain decreased and it was possible to do more physio with her. Janet came 5 days a week to start with. She had 2 main priorities for Kayda: one; that she would be comfortable enough for me to hold her on my lap and two; that she’d tolerate being lifted and carried enough to be able to move her bed back into her bedroom. It took awhile but eventually both those goals were reached. One benefit of her surgery was that now her legs could come apart enough for her to straddle my lap and rest her head on my shoulder. That quickly became her very favourite position.

Once Kayda was comfortable out of casts she returned to school which she loved. The teacher, her aide and all of the children and staff were wonderful.

With the coming of her 7th birthday at the beginning of December, our next nightmare began. In our area, children only get hands on physio therapy until they turn 7. After that, physio is only on a consultation basis from the school aged therapy program. One physio therapist has 7 hours a week to see ALL the children in the district with special needs. Needless to say, no one gets very much attention. In January, which was 3 months after her casts came off, Kayda had an appointment with the surgeon when he came for his monthly visit to our child development center. He said that Kayda could come out of her brace for about 3 hours a day. Janet, asked him if she couldn’t be out longer so she wouldn’t have to wear the brace at school. He agreed to 6 hours a day out of the brace.

I then started using Kayda’s old chair and got rid of the ugly borrowed one. Big mistake!! As Kayda needed to sit up in her chair to be fed, and each meal took at least an hour I sent her brace to school so that she wouldn’t be out of it more than a total of 6 hours. There was also dressing time, hair brushing time, travel to and from school that all took place in her chair and when she was therefore not wearing the brace. But, after a few days Janet visited the school and saw that I was sending the brace. She said, no, the purpose of her being out of the brace was so it didn’t have to go to school with her. So, I just stopped sending the brace. At that time I didn’t know that the most stable position for hips is when the legs are abducted-held outwards. Having them in, next to each other, is when they are most likely to dislocate. I trusted Janet. I also assumed that Kayda was at least getting some time each day at school on her side with her legs apart. Early in April I noticed that her left leg hurt when it was moved. As it seemed worst when she had been in her stander at school and got better over the weekend we assumed it was due to the strain on her legs from the stander. The school staff weren’t really in favor of the stander as it was a lot of work getting her into it. I phoned Janet and left a message. It took 2 weeks for her to return my call and she said it would be another 2 weeks until she could get out to the school to check things out but in the meantime to make sure she continued to get into the stander 2-3 days a week.

Back in January the surgeon had given me a xray requisition slip. He wanted her hips xrayed just to make sure things were ok. Well, I never got around to taking her. It kept getting put off. I finally took her in early in April, around the same time she started having pain again. In the meantime, her pain increased and she seemed only comfortable when her legs were held apart. Not wanting to wait for an appointment with the seating clinic Dave & I just managed to widen her seat enough that she could wear her brace and sit in her own wheelchair.

Then, one day, the word came through to the school and afterwards to me, that there was to be no standing and no time whatsoever out of the brace. I was mad that Janet told others before me-she later apologized. What had precipitated this, was a phone call from the surgeon. The hip xray just done showed that her left hip was once again dislocated. We later found out that Kayda was getting almost no time while at school with her legs abducted. If it hadn’t been for the lousy funding from the government this could have all been checked out before Kayda was feeling pain. That poor little girl had to go through so much. And, none of it was her fault. She just experienced the results of other peoples’ mistakes and poor decisions; mine included. I should have pushed the issue with Janet when she told me to stop sending the brace to school. I should have gone in to the school and made sure that Kayda was having time out of her chair with her legs apart each day. The only way to “fix” the problem was another surgery.

The surgeon then called to explain all this-he just hadn’t been able to get a hold of me so phoned Janet to make sure that Kayda was kept in her brace. He gave me a date for surgery that was only a couple of weeks away. I hung up the phone and cried. My poor little girl was going to go through all that pain again. But, the day that the surgeon phoned Kayda had started to come down with a bad cold. So, the surgery date was in question.

Chapter 23: School: A New Hope

Kayda was to be in casts for 6 weeks. It was decided that as long as an appropriate aide could be found, there was no reason she couldn’t attend school while still in casts. I’d had a few conversations with the principal. He sent over a couple of potential aides to meet us. People were always shocked to find her in her bed in the living room. I always had to explain that it was just because she was in casts. She really did have her own room.

We liked the 2nd person that came to meet us immediately. It turned out that her son had been in Kayda’s class the year before. This person too had concerns about the previous school. “Kim” was hired and we set out to make preparations for Kayda to start school. I would attend with her until everyone was comfortable with her care.

It had been decided that it would be ok for Kayda to be registered in grade 1 at the new school. Our first day at school gave me my first hint at the fact that things would be very different there than they had been at the previous school. The teacher was showing us around the classroom. Adjacent to the classroom was a little glassed in annex. I said “oh this will be good when Kayda gets noisy” The teacher replied that yes, and there was plenty of room for friends to join her in the room.

One day during that Fall I had to stay at the school because there was a new aide or something like that. I sat in the front entryway most of the day. All morning I could hear Kayda being very vocal. At her previous school she’d been sent home many days just because of that. So, at lunchtime I went to the teacher and asked her if she wanted me to take Kayda home. She looked at me and said “Barb, this is a grade 1 classroom. Grade 1 classrooms are noisy. If she gets too loud, we’ll just get louder”. During all that year, Kayda never once had to be taken out of the room due to noise. The teacher just arranged to have the activities that required quiet and concentration occur while Kayda was out of the room for personal care time.

Even in casts, Kayda was totally accepted by her new classmates. Before she started school I wrote a little book with lots of pictures in it about her and her differences and similarities. That’s what impressed the other children about her; She had a book written about her. Not that she was in casts or couldn’t talk or whatever. Kayda was a fully accepted member of the school.

Chapter 22: A New Miracle

I had been afraid that she’d lose some of her skills from the effects of the surgery.   Well, being who she was, she had a surprise for us.  I had brought various soothing tapes to the hospital and had them playing during the long days she slept after the surgery.  On the second side of a tape my mother had taped some stories told by Pete Seeger.  As she woke up I noticed her listening to the tape.  I found some other taped stories and tried them.  She was glued to them.  I couldn’t believe it and thought I was imagining things.  As other people visited I put the stories on and once again she clearly focused on them and listened attentively.  People started telling me that they could tell she was listening too.  I wasn’t imagining it!  This little girl, who was in so much pain and supposedly in a “vegetative” state was listening to stories! Listening to taped stories became the ticket to comfort for Kayda during her long recovery.

During the weeks and months after her surgery her love for stories grew and I got busy finding and taping stories for her. We discovered the Classical Kids series by Susan Hammond. I first brought home Beethoven Lives Upstairs. She seemed to like that so I found a few more at the Library. I still remember the night I put on the Mozart story which was called the Magical Mystery. It was bedtime, but she was clearly fascinated by the story. I can’t tell you exactly how you could tell she liked the story. It was something in her eyes and the way they flickered and focused on the story. For the first time, I let my little girl who was supposed to be a “vegetable” stay up late to “read”. I quickly learned that she didn’t like all stories. Not even all the Classical Kids stories. She loved the Beethoven, Mozart, and Vivaldi stories but didn’t like the ones about Bach or Tchaikovsky. I don’t know what it was. I do know that the Bach & Tchaikovsky ones were more just talking rather than an actual story with a beginning and an end. I remember one time she showed this with great delight. Throughout the time Kayda had been with me a nurse that had known her since she was a baby had been in our home frequently, usually to train new caregivers or work on her healthcare plan. Early on, I had commented a few times to this nurse about things I thought Kayda was doing and she’d say “well, you know Barb, she’s really low functioning” ie; you’re imagining it. This one day though the nurse had brought a nursing student out to talk to me about what it was like to care for a child with multiple health care needs. Kayda was in the living room listening to the story about Bach. She kept fussing. I went over to her and said “oh you want to hear the Beethoven story, not the Bach story” and turned the tape over. Kayda was quiet and happy from that minute on. The nurse was very impressed and she told her student that she now uses Kayda as a very good example of why parents should never take the dire predictions of Doctors literally. Even for a child like Kayda there is hope.

There was one change in her behaviour after the surgery; her previously active hands lay still. There was no exploring textures or fiddling with toys. It appeared that the pain from the surgery took up all her energy. That’s why stories became so important to her. It took her nearly a year after this first surgery for her to start exploring with her hands again. I found that sad.