Living with Traumatic Brain Injury

July 23, 2007 changed my life forever. My husband was injured in a motorcycle accident. External injuries were minor, broken arm and nose. His more extensive injury took a week to determine. MRI determined he had a Diffuse Axonal injury. I was told about it and then given the prognosis of less than 10% recovery. At that time he was in a coma in TICU. The never actually said it but it was implied that if he came out of the coma he would probably be in a vegetative state forever. After 2 1/2 weeks in a coma he was then listed in a vegetative state and move out of the TICU. Once in the IMC ward we had our issues.

A week after the accident he was put in isolation due to an infection. We got out of isolation in December 2007 for a few weeks.

One issue that came up and caused me the greatest frustration is the lack of hope the doctors had that my husband had any chance of recovery. They repeatedly told me he didn’t track or follow them, to which I said that they were full of it. I repeatedly told them of experiences of he doing just that when others came into the room. I even told a doctor that my husband didn’t do things for them because he believed that they wouldn’t accept or believe him therefore do nothing about it. They just wanted him out and kept pushing to move him to another facility. Insurance had denied us moving to a Long-Term Acute Care (LTAC) facility in August, 5 Skilled nursing facilities denied him due to his trach. I finally got approval to move to the LTAC in November and that was the best thing for his recovery.

Once at the LTAC he was finally seen by a Neurologist who actually ran some test to see what was going on with his brain. Tada, activity. A week later he was upgraded to Minimally Conscious. They actually tried things with him and believed he would recover.

We had continued battles with insurance as to what was medically neccesary over and over again for the next 7 months.

Finally after exhausting all options for facility care with the insurance he came home and I have been his care giver ever since now going on 9 months. A month after he came home due to a pharmacy error and not getting the medication before the weekend, we discovered how medicated he really was. Two days after running out of the Baclofen, he started having a coherent conversation with us. Not just a word or two, but complete sentences. We never gave the Baclofen back to him and we have not had any further contractions that they were trying to prevent.

He now has control of his legs, but still can’t sit up, stand, walk or use his arms. They are coming back very slowly. He has memory of his past associations, experiences etc. He has short term memory issues and he doesn’t recall much from 2007 to date. He does recognize anyone he knew who has come to visit. If fact, several times while visiting him at the hospital his friends would ask if he knew who they were, if he recognized them, and I always told them that he did and now I can prove it. When they come to visit him now I make him tell them who they are by actually saying their name. That means so much to them.

He still seems to have his sense of humor and his personality still seems to be there. The recovery is very slow but I have never given up hope that he will regain his ability to do things again. With continued battles with insurance and the limitations that I have been subjected to with regards to his rehab, we are doing it our way, right or not, but it is what it is.

I have had the numerous battles even finding out more about DAI and there never seems to be enough about that it all stems toward the TBI with DAI is a form of but it seems to have its differences as well. I know that there is lots of time left in him for his brain to heal but my only obstacle is my patience. I know how frustrating it is to not be able to fix what is wrong. I still get moments of self pity that my life is like it is. He doesn’t realize how far he has come and he doesn’t realize how much he can’t do except for that moment. He doesn’t remember that he couldn’t do that same thing earlier so there isn’t any ongoing frustration, just the momentary frustration. It is hard and exhausting at times but I’m not going anywhere and I know that he knows that, and that I believe is his source of faith.

A quote I got from a book I read called ‘My Stroke of Insight’ by Jill Bolte Taylor really helped my understand some of what my be going on with my husband, she had a comment in the back that said - “Treat me like I am going to recover, even if it takes 20 years.” That is my plan until something changes, to treat him like he will recover, the only question is when?. So never give up hope.