Summary – the cause – the injury – today’s quality of life?
My adult son, Ryan, was being treated for severe ulcerative colitis. After several medications, his doctor said they would try chemotherapy, something that seemed drastic to me. Ryan had a severe reaction to this medication, which was taken daily and broke down the immune system. His doctor insisted that he continue, even though he was vomiting, had diarrhea and was only able to lay in front of the toilet and sleep so that he could be there if needed.
After three weeks of this, Ryan decided to discontinue the chemotherapy. A week later, a severe headache took him to the ER where they found a brain abscess. A week later he had open brain surgery to aspirate the fluid, and then another week later, another brain surgery to remove the abscess. The fluid was sent to Johns Hopkins and we never did find out the cause of it. The initial visit to the ER was on Memorial Day, 2011, and surgery was mid-June 2011. He did not recover well from the second surgery and in early July was taken to Dodd Hall at Ohio State University Medical Center for rehabilitation. After five weeks, he then had a brain bleed and had to have yet another brain surgery. We realized then that he was only going to get better with somebody loving him into wellness and we brought him home the last week of August. I don’t know what the doctors thought of this. We were given very little information about brain injury and Ryan’s brain injury in particular. When he came home, he was all but bedridden and my husband, a past paramedic, took care of all of his medical needs aside from a visiting nurse coming in to take blood and vitals. Now, 1 1/2 years later, he is much recovered, but still not 100%. He lived on his own and had a good job. Now he is on Social Security Disability and will probably always live with us. We plan on starting him at a fitness center near us to try and gain back some strength. He still has very short term memory loss and neuropathy in his feet, along with diabetes insipidus (DI) and has to be monitored. He is on Warfarin for blood clotting issues and had to have a mesh screen put in him to keep clots from traveling. He is a bit childish but doing well.
PLEASE SHARE YOUR EXPERIENCE AT THE TIME YOU BECAME AWARE OF THE INJURY?
My husband and I should have insisted from the start that he be taken to OSU for any surgeries. Sometimes we received good information, but other times the doctor couldn’t be reached for weeks. Phone calls were rarely returned. I don’t think we realized at all what Ryan and the rest of the family was facing. I’m always as optimistic as possible, but I think I used that to ignore the severity of the problem.
TELL ABOUT THE EXPERIENCE IMMEDIATELY AFTER THE INJURY. SURGERY? COMA?
After the first surgery, he did well, and was up and out of bed and we expected him to be home in a week. The second surgery left him badly injured. He was never in a coma and was awake and talking after each surgery. We weren’t with him for the third surgery and the doctor never even called us to tell us he was out of surgery. We paced the house through the night until I eventually was able to get through to a nurse in intensive care who said that he was awake and talking.
TELL US ABOUT THE HOSPITAL STAY AFTER THE SURVIVOR WAS NO LONGER IN A COMA
Ryan was never in a coma. We thought that taking him to Dodd Hall would be his saving grace. He did okay and they -were good to him, but he had other medical issues with his DI and colitis and had to be hospitalized twice, where they just let him lay with no therapy. He was moved from room to room and his phone was put in places where he couldn’t reach, so we couldn’t even call him. Every time we wanted to talk to him, we had to call the desk and tell somebody to go to his room and put his phone where we could talk to him. It was extremely frustrating. I don’t think that Ryan was even aware of anything going on. He says he remembers nearly nothing of his time in the hospital.
TELL US ABOUT THE TIME IN REHABILITATION?
I felt like his rehabilitation came too early in his recovery process. When we went to visit, we encouraged them to have him bounce a basketball since that is his first love. He was able to dribble down the halls with no problem and we were so proud. However, he would be coming along and then have to be hospitalized again and would be right back at the start. The people at Dodd Hall were good to him, but I just don’t know if it was the right time for him.
TELL US ABOUT COMING HOME!
We brought Ryan home after three months in the hospital/rehabiliation. He was in a wheelchair, weighed only 114 pounds and couldn’t remember what was going on from one moment to another. This was at the end of August, and he never remembered Thanksgiving and Christmas of 2011. He “confabulated” quite a bit. Once he got home, he did have more physical therapy here in town but insurance/Medicaid would only pay for a certain number of visits and it was over before it really helped him. We are putting him into a physical therapy group (that he will pay for) next week where he will have a personal trainer and hopefully some kind of social life there too.
PLEASE TYPE SOME SINGLE WORDS THAT DESCRIBE HOW TBI HAS TOUCHED YOUR LIFE. FOR EXAMPLE: FRIGHTENED, CONFUSED, SAD, ETC. ENTER AS MANY OR AS FEW WORDS AS YOU LIKE. SEPARATE EACH WORD WITH A COMMA
Frustrated, sad, relieved, thankful, and frustrated again.
TELL US ABOUT LIFE TODAY?
Ryan is about 85% back to normal. He will no doubt live with us for the rest of his life due to the fact that he has problems remembering to do things like taking medications. He has not returned to driving. He was divorced before all of this happened and has two beautiful children. He talks about them a lot and we have them here with him as often as we can, but that’s still not as often as he used to have them. He remembers all of the people from his past and we laugh that he has become a savant in music! He remembers music from the 60s and he wasn’t born until 1978! He has a great sense of humor, loves sports, and never lost his aptitude for numbers. He has also lost his ability to read or speak so he is very fortunate there. I just wish that he had more of a social life.
WHAT DO YOU WANT TO TELL OTHERS GOING THROUGH THE SAME PROCESS? TREATMENTS, UNDERSTANDINGS AND ACTIONS THAT MADE A DIFFERENCE?
Question everything and pray that you don’t have a doctor who patronizes you, like we did. Push for as much help as you can get. Apply for Social Security Disability. We had a great caseworker and everything came through in 3 1/2 months. With everything else you will be going through as a family, financial matters shouildn’t have to be one of them. When Ryan forgets something, we tease him about it and he will eventually remember when he knows that he is going to be teased. A sense of humor is a “must have” . . . even when it hurts to laugh. If you don’t laugh, then you’ll cry. I think that the love of his family and the caring of his friends is what has brought Ryan back as far as he has come.