I was just asked a simple question by a fellow blogger at “Time of Your Life“. He asked why pressure sores on Becky’s feet were such a problem if she uses a wheelchair and doesn’t require bedrest? I wrote a long answer, and then I wrote another answer to explain the first one, and now I’m thinking that I still didn’t explain it all; ‘did I mention that stretching Becky’s ankles is like trying to bend an ironing board’? The question really illustrated how little I have written about Becky’s disability. It’s not something I talk about to anyone outside my family, really, as I am a private person by nature. In this instance, I have asked for Becky’s permission, because this is hers, and hers alone, so here, with Becky’s permission is a post about her Acquired Brain Injury.
The car accident occurred when Becky was three and a half years old. She immediately went into a coma and didn’t gain consciousness for many weeks. She had two injuries to her brain; the first was a tear in the brain stem.
The brain stem controls all the essential organs; heart, lungs, and stomach, so Becky couldn’t breathe or eat. According to statistics, only 10% of children had ever survived injury to the brain stem. The second injury was caused by the swelling from the trauma, this is called a Diffuse Axon Injury. So far, very bad. Day 2, a blood clot had developed in the brain stem and the doctor told us, the parents, that Becky had 24 hours to live. I collapsed, in a big heap, on the floor. Then the doctor explained that they could do surgery, but it was very risky and Becky only had a 50/50 chance of survival. If she did survive, she could be a vegetable. So, there was only 10% chance of survival in the first place, the surgery cut that in half, meaning she had a 5% chance of surviving. Becky’s Dad signed for the surgery. I was a mess.
Well, she had the best surgeons on the planet, because not only did she survive the surgery, but they didn’t cause any more damage. We just had to wait for her to come out of a coma, and wait, and wait, and wait. We waited 4 to 5 weeks. It’s hard to say as the changes were very subtle. Becky started moving her right arm a little bit, but did not open her eyes. She did not open her eyes for many more days, and when she did, she was blind. A big surprise. She slowly regained some sight, and a little more movement. She learnt to blink for yes and no. After two and a half months at Sick Kids Hospital in Toronto, Becky was moved to a Rehab centre. The prognosis was poor. It seemed like the doctors gave us bad news every day. She wouldn’t move her legs, she would’t be able to read, swallow, talk, on and on. I only tell you this to explain that everything she does now, she shouldn’t be doing. There were zero expectations. She had to work for every single movement that she has. Typically with brain injury there is something called “spontaneous” recovery, where movement and speech return, in some measure, overnight. Becky’s injury was so severe, that it never happened. She has fought for everything, and deserves everything.
She didn’t eat for six months, and didn’t talk for almost a year. For many years, her speech was restricted to 2 or 3 word sentences. A wonderful speech pathologist helped enormously with Becky’s language and swallowing. Becky’s diet was mush, no lumps, no liquids. Obviously, she was motivated to talk and eat, so she worked on these two skills as much as possible. Perhaps now, you understand Becky’s
obsession enjoyment of food.
A big problem with brain injuries is spasticity; muscle tightness. Normally when we move, one set of muscles relaxes while another set tighten, and we have movement. When the brain is injured, it tells both sets of muscles to tighten, so not only is movement restricted, but there is a tightness in the muscles as well. It varies from person to person, and limb to limb. Becky’s left side is more affected than her right. As Becky grew, her muscles got tighter and tighter. When she went through the teenage growth spurt, her left arm, and both feet became extremely tight. She ended up having surgery on her ankles. It didn’t help. She tried Botox, which did help, but the experience was so traumatic that I vowed I would never take her again.
At times, Becky has been able to walk with assistance. At other times, like now, she can’t even stand. Her condition changes as she grows and develops, and as her brain also grows and develops. My frustration and heartbreak is to see her lose her physical abilities over and over again. Like once isn’t hard enough. I fight to keep her physically in the best shape possible, and she never complains. Twenty years of physiotherapy, and no complaints. Now she has been diagnosed with osteoporosis, it becomes even more important to save Becky’s ability to stand. Standing helps build bones, and she needs to build bones.
So here we are trying once again to get Becky’s left foot used to wearing the hard plastic splint, yet again. This is where the stretches are so important, and I feel like I’m wrestling with a house brick. When we are trying to get Becky back in the splints, I have to stretch her every hour or two, depending on where we are in the schedule. It makes it hard to go out and do anything, because you might forget to take the splint off (happened too many times already) and if you go out when the splint is off , then you really only have an hour or so. I can take the splint with us, but stretching Becky in grocery stores and parking lots is not my idea of a good time, especially in the winter.
I get tired, I get sore, I pull muscles, but somehow I always seem to manage. I don’t think I will, but I do. We are up to two hours wear time with the splint right now, and the goal will be three hours on the weekend. At this rate, everything should be fine just in time for Becky to go to summer camp, and me to have a break.
I hope this has helped explain some of the ongoing issues and some of our enthusiasm for life. Even on our dark days, we try to find something that makes us happy and look for the positives. Life can be taken away so quickly, so grab it while you can.