Being at home for the weekend after two weeks in the ICU of the stroke trauma team, was a tonic for Nicole. She was radiant. She was still mute but you could tell she was aware that she was home. She and I we communicating in some way I can't explain very well. Looks, touches, me talking trying to get close to what she wanted me to see or understand, head shakes yes or no. It bloody worked! I had promised her a few days earlier that we would go one step at a time. When she tried to express something we would not go on to anything else until I understood her, no matter how long it took. She was not going to be frustrated by losing her voice. The time I was spending at night online communicating with people who knew what she was facing paid off so much. I learned the right questions for the doctors and the therapists. I had insight into how to work the system to her advantage. I was no longer in the dark about what help she needed to have the best chance of as much recovery as would be possible. Now to make it happen.
I took her back to the hospital on Sunday night. As during our drive home from the hospital, Nicole was terrified. Remember, everything she sees she sees for the first time. Within a minute or two of getting in the car we are speeding down an expressway in traffic. She whimpered and tried to duck down. I had to slow down as much as was possible, hold her hand and talk soothingly. I told her where she was, what we were doing. None of it made much sense to her yet, but in time it would. She was my big, beautiful baby.
We were now a week before Christmas. I got to the hospital on Monday morning to find Nicole walking up and down to hallway tugging on the nurses gowns, yelling, "therapy, therapy!" Everybody was smiling.
A meeting with Dr. Lawrence, Dr. Minuk and a group of therapists. They were cautious with offering up too much hope. She had sustained major brain damage to her frontal lobe, the broca center destroyed. She is fluent aphasic. She has major damage to her right field of vision, it will never come back.
We were told, as I had already learned, that time was of the essence. The sooner therapy started the better. The best thing now was to place her into a convalescent hospital for the allotted three months. Nicole and I were behind this idea. We had already started. I gave Nicole pencil and paper. I still have the marks and notes she made in the early days on those sheets of papers. That week her voice came back. She could say words. The wrong words mostly. No sentences. We had a discussion a few days earlier with Dr. Minuk who suggested that because Nicole was a true left handed person she had a better chance at gaining back some of the deficits. When I looked into that it seemed so. The afternoon I was writing and reciting numbers one through ten. She could say some of them, not others. It was encouraging. Next morning at home, very early, the phone rings. A hoarse little voice proclaiming loudly, "1,2,3,4,5,6,7,8,9,10 and I can go FOREVER". That, I shall never, ever forget. A sentence! A whole idea expressed! That was not going to happen very often for many, many months. If it happened once, surely we could make it happen more frequently.
About this time you must understand that I am not driving things anymore. Nicole is, through me. Remember, we don't go on to something else until we are straight on what she is trying to say. We just don't. The Doctors understand that, the nurses and therapists too. I am her translator. She makes me understand what she wants, I report it. I am her tool. Everybody adores her and wants to help her. She never stops smiling.
Being the holiday season there is some problems getting her into the facility that the trauma team has picked for us, The Julius Richardson Institute. Top shelf place, and, that poses a problem. Nicole cannot go from home to the Julius Richardson. She must go straight from the hospital to be treated as an inpatient. We started asking questions about how much therapy she would receive each day. It amounted to three hours. We were told that there was also a possibility of her being treated as an outpatient at the Julius Richardson, 3 times a week for 3 hours each visit. They could stretch that out over 6 to 8 months. I felt that we could do more work together if she took primary therapy as an out patient. During the time in the hospital I had found a part time job, sole employee of a BBQ propane fill shop. Dead in the winter, all I had to do was be there. They were cool with me bringing my wife with me to do work with her. They understood my situation and it suited them fine. I had contacted a few lawn bowling buddies to arrange for help with transport. If we were going to do outpatient I was going to need a lot of help. For the first few months between her therapy sessions and her medical appointments we would need up to ten transports a week from Pierrefonds to downtown Montreal. Our friends stepped forward with the help we needed. They would be there for her. We decided to go with outpatient and bring Nicole home. We could work 24/7. Since her stroke Nicole never can use the word work. She says play instead. And so it is.
Just before Christmas she came home for good. The good therapists at the MGH loaded us up with books and exercises to do. Mom had the cards and board games out. We were ready to play. We were going to go back to the MGH in the new year, 2000, for follow ups. We still did not know why it happened. They were not going to stop until they understood why is what Dr. Minuk told us.
Next: We meet the angels at the Julius Richardson
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