Monday, March 25, 2013

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.

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