A couple’s journey continues…

When Bill was released from the hospital several months after his brain injury in June 2006, he was still on medication that really played havoc with his mind. He wasn’t sure where he was, what he was safe to do, and what had happened. Over the next few months that medication was regulated.

He has short term memory from a bleed to the back of his brain. He has lost his ability to read and write from the same area. He had his first seizure at the end of the first surgery, and the doctors’ were not very hopeful that he would survive, and if he did, he may not walk, he would always have a gait toward the right leg, he might not be able to talk. He might get an infection and if he did he may not survive.

Two weeks after the first surgery and two weeks on a respirator, his brain began to swell. A spike was placed in the top of his brain to begin to drain the fluid. Taken off the respirator and transferred to a neurology floor with someone sitting with him during the night, the sitter watched him pull the spike out.

It was my habit to call the hospital if I woke during the night. This night, I called about 11:30 and the nurse was unusually agitated. She told me about the spike and that the Doctors had been called. “We have a fluid leak.” I did not know what that meant, and five years ago, did not care. I was on my way to the hospital.

Pulling out the spike was not a problem they said, but the leak of cerebral fluid into the brain was. They asked me to sign for a Ventricular Pump to be placed into the brain to drain fluid that would fill the ventricles. I am still not sure I understand what this means, but it was urgent that it be done quickly. His neurologist calls this a second invasion into the brain, and I know it saved his life again, but it did cause more injury to Bill’s brain.

There is no judgment here against the doctors. Bless them for doing what they had to do to save him. As he healed, the seizures became worse, and that has become a major difficulty in his life.

For the first two years, Bill was in the hospital monthly with seizures. He was on the maximum amount of anti-seizure medication, but the seizures were not being controlled. After long term testing, and a clinical meeting by the epilepsy staff at Albany Medical Center, he finally received permission to have a Vegus Nerve Stimulator implanted into his chest, wire an electronic wire that would stimulate or shock the nerve in the left side of his neck. This was intended to reduce the number and severity of his seizures. It was tuned to the highest level possible, going off every 1.8 minutes for 30 seconds. Almost all the time. He also wears a magnet that may help if he feels a seizure coming on. Sometimes it does, other times it does not. He has a paralyzed vocal cord on the left from the surgery. Bill, who has always been a super achiever, compensated very well for that.

After a year, Bill realized the VNS was not working. He was not feeling any tingling where he had before. After the surgeon checked it thoroughly, they determined it had failed. Both the lead wires and the machine had to be removed and reimplanted. If this one does not fail, he will only have to have the batteries replaced in the future. If the wires fail again, he will not be able to have it replaced. The doctor explained to me after this surgery that there was barely enough nerve left to do it this time, and he will not be able to replace it again. This was not good news to me. It is a fear I live with. The failure rate on these machines and the leads particularly is fairly high according to the FCC who receives and records complaints online.

Bill and I have moved to an apartment where we are comfortable, and his son has taken over the mortgage on the house where he and Bill had lived all of their lives. Medicaid would not allow his family or me to keep the house after his death, and it was advised by the lawyer that this needed to be done to get Bill on Medicaid which he will need for chronic care.

Bill has told me he will never go in that house again. That loss is one he is unable to address right now. His son visits him away from there. That relationship is one he is in the process of repairing, and I am proud of both of them for this. It was a long road to get this far, and it will take some time.

I think that is enough loss for today. As I said in the introduction, this is a continuing journey and a hard one to write. It is painful to share for both of us. It comes to life in our hearts when we write it and I read it to him. We can only take so much at a time. Bill cannot read this, but his brain is still sharp and witty. He is my co-author and best friend.

Please pay attention to those side effect warnings on some of these anti-depressant, anti-seizure and so called psychotropic drugs, sleeping and anxiety medications. It could save your life or the life and brain of someone you love.