Acquired Brain Injury

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.

Brain

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.

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About chebandbecky

I was born in Birmingham, England and emigrated to Canada in 1988. Becky is my daughter who was injured in a car accident. We are working towards her independence.
This entry was posted in Disability, Family, Grief, Life, parenting, Uncategorized, wheelchair and tagged , , , , , , , , , , , , , , , , , . Bookmark the permalink.

10 Responses to Acquired Brain Injury

  1. Spashionista says:

    Thank you for sharing this with us. I can only speak for myself but I appreciate having a thorough understanding of someone else’s disability. I have brain damage, too, and suffer from some spasticity as well. They told my parents I’d be better off in an institution because I’d likely be profoundly retarded and never be able to take care of myself.
    Doctors can be SO wrong! 😉

    Spashionista (Alicia)

  2. lizseville says:

    I have spasticity from m s and I send my love to Becky because I know some of what she is battling with. It is like being locked in an iron suit which is too tight. I wonder do you have conductive education out there? That helps me a lot.

    • chebandbecky says:

      That’s an amazing description of spasticity. Thanks for that, Liz.

      There was some interest in conductive education when Becky was younger, but it seems to have fizzled out. She likes yoga at the moment. That’s good too.

  3. Firstly Cheryl, your answer on my post was perfectly clear. Sorry I didn’t thank you properly.

    Secondly, please thank Becky for me. Thank her for letting you tell some of her story and that lots of people will benefit from it. If you could tell her that it was very brave and I’m glad that I feel I know her now.

    Also, thank you. It’s not just Becky’s story but it is also yours. I enjoy reading about your day-to-day life together and now you have given it more perspective. Now I can understand things like why you like cooking together so much (and the eating afterwards!).

    So thank you both

    Steven

    • chebandbecky says:

      I read the comments to Becky and she says, “wow” and then “you’re welcome”.

      It’s all your fault!!! 🙂 You probably asked one of the questions that everyone else was thinking. That, and your courageous writing, gave me the nudge I needed to open up. Thank you.

      I love reading your story too. I’m so glad we connected. 😀

      Cheryl

  4. I work for doctors – orthopaedics ones – and when Kodi was born I swear they gave parents the worst case senecio on purpose. I still wonder if that is the case so that we celebrate the little good thing as though they are amazing… Also I think they fear giving us too much hope only to be dashed. But to go as far as put someone away in an institution is way to drastic. Tell Becky thank you for letting you share. Privacy is good but it helps other know what exactly you have to go through to understand. I try to be realist ice but also keep it somewhat light and not discouraging… We really see the negative and live it but also try to see the good in all negative just to help endure. And then find fun things as well.
    Kodiak had Botox as well. And as bad as it was he now can walk flat on his feet. We had to a couple of times and probably will have to again in few years… But I will not do some things to him again!!! 🙂 you are a good mom!!!! 🌺

    • chebandbecky says:

      Doctors can be really negative, but in Becky’s case, I also think they didn’t know what to expect, and some of them said that. Obviously, there was much more medical intervention than I wrote about, but the main story is there. I’ve told Becky that people are thanking her for sharing, she says, “wow”!

      I’m glad the Botox helped Kodiak. It’s an amazing breakthrough, but the injections are nasty.

      Thanks for sharing, and thanks for reading.

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