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.