One day at a time...

wasnt that a TV show!? (LOL for those you who really know me... I love 70's and 80's sitcoms)☺

but that is our motto in this house!

As I sit here typing this out, our Sammi is upstairs sleeping in our bed (we have a tv in our room) with a fever, sick stomach and vertigo. It is his normal day for staying home but today he is sick. I have had him up and in a cool shower, gave him Tylenol and sent him back to bed. He white as a sheet and looks horrible. I always get worried when he has a fever since we have to be sure the fever doesn't go to high and trigger seizures. (never have had one yet but the doctors still tell us to be very careful with them).

Last week on Tuesday he came home from school fatigued. White, slightly limping and his left side ever so slightly drooping. It took until Monday for him to 'get back to normal'. Then he came home last night feeling sick and just blah. So i wonder if it wasnt starting last week and finally hitting him now... who knows.

Sam and I had a great talk last week and he has decided to have the plastic surgery done on his head. This will be a metal plate put in to cover  the 'hole' where the bullet entered. I was shocked when he told he that this was what he wanted to do AND that  he had been thinking about it for quite a while now. He says he is bothered by the way people will watch his head and not look him in the eye when they talk to him (usually this means his friends). Around the entry wound area is not only a long scar but the 'hole' and a person can see his heart beating there and it will pulse or bulge when he is stressed or there is pressure from straining. We had told Sam (from the beginning) that this would be a decision up to him alone. It is him that would have to live with the scar, the 'hole' and whatever else is involved, and we have never brought it up again.  And his reasons for wanting to do it make sense to me. He is a teen and wants to not be different. But there is more to it... kids are also asking to touch it. This is one thing that distresses me! Sam has said that he didn't mind at first but now it is getting to be too much.  So we have talked about it, and I have called our TBI co-ordinator (Gail) and am waiting for her to call me back to see how we go about getting a consult and with who.

Sam lately has been having episodes of vertigo. He will get dizzy when sitting then standing (which is normal for a lot of people) but he will also get dizzy when walking, standing AND while sitting! So I hope to ask Gail about this too. I know it is normal for a lot of survivors but it doesn't hurt to just double-check. We have told Sam that he needs to be aware of when it happens and what happens b4 he feels the full effect of it so he can know while riding a bike or climbing up a ladder, etc. to get himself in a safe position.

He is still having stomach issues to the last while. Meaning his stomach will physically hurt, then he tends to lose his appetite. I havent found much info on this so it will be another question for Gail.

Once again our lives are taking a turn and things will be very different around our house, but for now I will leave it for a future date to talk about! BUT we did sell our house and as of tomorrow (Mar 25) it will no longer be our house! YAY!!! Thank you Lord!

My blog will be under construction the next little while as I get used to the new formats and get the right background and widgets on here. I need to transfer over the info from the old blog once all that is in place! If there are any ideas for here please let me know!

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...

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...