Friday, March 12, 2010

wishing I could take these mitts off...

I found a link on facebook today from a 'friend' (someone i have never met actually) that is aquainted to me via a TBI. She posted this link to a blog with a great post for today.  As i read the post tears ran down my face when it FINALLY struck me that Dennis and I were not educated on Sam's injury when we left HSC! I realized that yes we knew he had a frontal injury (along with other lobes due to teh bullet travelling thru the brain) but we figured it all out on our own... no doctor (or nurse) told us that we would/could expect this or that to be noticed with Sam. we were not told that there may be personality changes or other issues. We were just smiled at and patted on the back "good job!"  now go home. we have NEVER been told that he had a frontal injury, or any other injury to any other lobes by a doctor. It is evident that there is damage when you look at the CT scans and can see where the bullet fragments are sitting -- but no one ever TOLD US anything else. And to be honest at the time I never even thot to ask... they were the medical professionals, they would tell me what I need to know... right!? Right!? And I was just a bit preoccupied with caring for my Sam and not having a mental breakdown right there in the hospital over the whole thing.

Now as I read about other survivors and caregivers and talk to our TBI co-ordinator at the HSC (she is great and helps us to arrange all our appt.'s into one day if possible or over 2 days) I am seeing how we were left swinging in the breeze with what to expect! We were all just so happy to a.) have Sam with us AND  b.) be going home.

I know that to some people this seems like a silly thing to think about now (18+months after the fact) but it is another one of those things that makes us wonder "are we going to be blind sided by something else soon?" which we have quite a bit in the past. are there things we should be doing as caregivers to help him? Have I missed that important window of 'opportunity' to get those wires that needed to be mended at a certain time? Does knowing the areas (meaning being confirmed by doctors and not what we have pieced together on our own) that were/are damaged help us to know how to help him?

The lady that writes this blog talks about frontal lobe injury affecting senses of humour. Some survivors will find slapstick humour the best to understand-- and that is Sam now (he has recently discovered the 3Stooges) Sam still some what will exhibit his 'old' razor tongued humour but for the most part now he is into the bathroom, slapstick, Keystone cops kind of humour. (Not normally the kind of humour a teen reverts to as they get older) The frontal lobes also is the area that control our emotions-- maybe an explaination why Sam is an extreme roller coaster of emotions! It is a lobe that is responsible for many different functions of the body.
Sam has also ben having issues with his stomach. He has times when his stomach hurts-- physically hurts him, along with a nauseousness to follow. This will last for an hour or 2 then pass... until the next time. He still gets pain in his head near the entry wound area which result in flashing pain and the a radiating pain on the right side of the skull. He has sleepless nights -- but the sleep clinic says there is no need for concern but by just looking at him in the morning you can tell he had a restless night-- part of his face is swollen (again -- no reason for swelling) Foods that he would normally like are now gross, his love of spicy foods is still there but he cant taste the 'hot', chocolate is a major NO NO (tastes like dirt to him).  Lots of different 'little' things and some 'big' things that we have no idea about how to or if to deal with.  Wen we ask it is brushed off OR the most popular past time for medical professionals (or who ever we are to deal with) dont tell us what are SOME OF the possiblities or send us in a direction to seek answers if we have questions (lets not forget we are  3 hours from Winnipeg -- so getting help from one of te specialist there is next to impossible).

Again it is just one of those (not being educated about anything)things that makes you wonder if we even know the whole picture (who ever does...) or even a corner of it! How do you ask questions when you dont know what you are supposed to be watching for? How do we know things are 'normal non-issues' or something we should be concerned with? (is it any wonder I am hesitant to take him to the doctor if I think there is something wrong?!)

 I still feel most days like I am working on that puzzle -- blind folded with mitts on in the dark...

1 comment:

brokenbrilliant said...

Sorry to hear you didn't get decent information from the get-go. That seems to be what happens with most of us. Hopefully, if enough of us keep talking about this, we'll be easier to find online and other people who have these kinds of TBI issues will find the help they need.

Have you heard of "Children With Traumatic Brain Injury: A Parent's Guide" by Lisa Schoenbrodt? I have read parts of it (I'm interested, because I sustained multiple traumatic brain injuries as a young kid) and it seems like a good book.

Also, here's a web page that has info you might find helpful: It really helped me start to understand what effect my TBIs had on me as a kid. I truly didn't have a clue until a few years ago (nobody ever talked about my injuries -- everybody just tried to forget) . But then, suddenly, so much actually made sense...

Another resource for you is Give Back Orlando -- a group of head injury survivors who have information for both survivors and family members. They have helped me so much -- especially with understanding the nature of my injuries (9 different head injuries - that I remember) as well as believing that I could actually come through it all in one piece and not just survive, but thrive. Check them out at

Well, good luck with everything. Feel free to pay a visit to my blog -- -- I've got some info and resources there, and you're welcome to share anything you like. You're not alone. There are tons of us out there... we just have a hard time finding each other (and our keys.... and our unopened mail... and our grocery list... and that phone number we were supposed to call three days ago ;)