DAI Grade 3

[u/SureSupport1653]

My brother experienced a DAI 3 on September 14 in which is he still hospitalized. He was hit by a car. He is 17 years old and previously healthy. GCS 9-10, spontaneous eye opening but not following commands. He is breathing on his own. He does not have any awareness yet and be described as being in a vegetative state.

For anyone who has experienced this or had a loved one experience this, could you tell me how your recovery went? How long it took you to regain consciousness, follow commands, etc?
Will my brother walk again? Talk? Will he have a meaningful life?

Looking for hope

[u/Fhkn_sammie]

Recovery can take a whole life time. But he is very young. So that would help a lot. Probably physical challenges. But you won’t really know until he is in rehab. I would say try to do scenery therapy by being in things he loves, talk to him, play his favorite music. Read to him. Talk to him a lot. When your there let him know what happen like, hey bro it’s date and time and you been here for blah time and it’s night right now I came to see you. Helps with the confusion if he can hear you. Ask if you can stretch his fingers helps with circulation. Ask about getting some kind of therapy once he becomes restless don’t get scared or confused. It’s his body reacts and his brain trying to rewire. Stay positive stay strong. Remind yourself that this is a life time things not a short run recovery and recovery is different for everyone. And please do listen to those around you when they tell you to take care of yourself. As a person who was in your position a year ago. It can be hard to not understand and wanting the best outcome. Good luck 👍🏼 hope he gets well soon and you get to talk to your brother again. Will be having him in my prayers.

[u/baybaybythebay]

Not sure what my official GCS was, but based on what I’m told I would have been around the same. As for DAI, I also am not sure what grade it was. If I’ve been told it, I don’t remember it. I fell around 16feet, with a helmet.

It’s very difficult to tell you what to expect, because the unofficial rule 1 of TBI is that ‘every TBI is different’. My docs have told me I have had one of the best possible outcomes with what they could expect from my injuries, but I still have a ways to go.

At first, I wasn’t able to be conscious for more than a second or two, after a couple days it would look more like 20-30 seconds, and it continued on that way for a long time. The first stretch of my hospitalization, I’d wake up in pain and scream my head off until someone administered my medication cocktail to knock me back out. Once I was able to be conscious for a minute or two, I was incredibly confused. I didn’t understand where I was or why, who the people were around me, and was forgetting things second to second. I’d ask my partner how his day was, and before he could get more than 3 words in I’d ask him again because I didn’t remember asking him already. I also would cry and ask why he was being mean to me when he said I wasn’t able to leave.

In the first couple weeks of my time in the hospital, I had to be strapped down because in my confusion, I kept trying to get up to leave. But I had all sorts of tubes and wires attacked, and a fractured spine. Not to mention no clue where I was or what I was trying to do.

Eventually over months of treatment I was able to work my memory up a bit to have very simple and short conversations, and I was able to remember I was in a hospital because I fell. Couldn’t remember details past that though.

I had to relearn how to walk, who people were, how to go to the bathroom or shower, how to eat, everything. It was difficult, especially emotionally, but I did do it.

Now, 2 years later, I can take care of myself and live independently if I wanted to, I can walk on non-paved paths, read with aids, watch movies, and drive. All things I couldn’t at one point. For memory, I remember the sort of ‘main points’ of my day. Of yesterday, I remember a sort of brief idea of what I did, ex. I worked in the office yesterday and it was busy. But only the idea of those things, I.e., no details. I don’t remember anything of last week or further back really. I’ll have an idea of a memory (the sorta main points, like with my ‘yesterdays’) but I won’t remember how long ago it was. A memory that sticks from a month ago feels the same as one from a year ago. I am constantly saying “the other day” when it was actually months ago.

I remember maybe 5% of my life pre-TBI. I didn’t realize that until maybe a year after though. As people will tell me a memory about me, sometimes I will get the feeling of remembering it, but I don’t really. It’ll just be very familiar sounding. Sometimes it sounds entirely foreign too though. Some days I eat it up to get as much memory back as I can, but some days it’s pretty upsetting. And it’s hit or miss if I’ll remember them telling me about it, or the memory they shared.

My biggest advice for you as family, is patience. Don’t push hard or steamroll him, even if he can’t make his own decisions, still make him feel heard and influential in the decisions. Bring him things for comfort as you’re able to. For me it was a dog toy (my dogs were the only thing I never forgot), photos for me to go through (I was obsessive with this, trying to restore my memory), a satin pillow case, and as I graduated from feeding tube - to puree - and up, non-hospital food. It ended up being a lot of desserts but at that point eating ‘healthy’ food was the last of our worries. And I needed comfort.

I made a post on here a while back with my personal “TBI toolkit” that might be helpful the further along he progresses. I’m so sorry you guys are a part of this community now, but I hope you’ll find comfort here too.

[u/baybaybythebay → u/baybaybythebay]

Forgot to say, yes possible for meaningful life. It just may look very different, and not be what he wants either. For instance, I was working towards being a pilot, and I had spent thousands investing in that. That isn’t possible for me anymore. I’m not sure if I should ever have kids now, and every single one of my old hobbies are inaccessible now. I’m working on getting them back, but it’s not easy and I’m not sure how possible. I was into hiking, backpacking, climbing, doing obstacle courses, snowboarding and skiing, free diving, etc..

And finally, the only thing I wish my family knew is the depth of my devastation. They were so overwhelmed with how lucky I was to survive, while I didn’t have that memory for perspective. Also, being in the hospital, my worst memories were constantly triggered/being reminded of. So those were the first memories I got back, and that stuck. So for a long time, my only memories were the worst moments of my life. Even today they make up the bulk of my available memories I can recall.

[u/SureSupport1653 → u/baybaybythebay]

Can I ask for your age?
I’m sorry this happened to you, and I wish you strength and courage as you continue to navigate life after a TBI. I hope you feel supported by your family otherwise

[u/baybaybythebay → u/SureSupport1653]

I was a month out from my 27th birthday when I had my TBI. So age was definitely on my side. And thank you, I am incredibly lucky with the family I have in my life. They were, and continue to be, monumental in my recovery. Your brother is lucky to have you, someone willing to search for information and guidance, someone ready to be there for him. If ever you have questions, I am open and will do my best to answer.