This past Wednesday I left the house at 7:30 am along with my entourage of my wife Diane, my son Dan, my health aide Jimmy, and my friend Gil. We arrived at UMDNJ in Newark about an hour later. The surgery was scheduled for noon, but the hospital staff managed to fill up most of the three and a half hours with paperwork, x-rays and EKGs. I also had brief opportunities to speak with the doctor, anesthesiologists and nutritionist. By the time the whole thing was over, we finally arrived at home at 7:30 in the evening. It was a very long day.
All of the hospital staff was very nice and attempted to answer all of our questions. Unfortunately, they all shared one very sad characteristic – the inability and/or impatience to listen to someone with impaired speech. Prior to and after the surgery, my entourage made sure that I was understood and that my needs were met. During the surgery, however, none of them were allowed in the room, and the lack of hospital staff listening skill proved to be a disaster. I was supposed to be anesthetized to a “twilight” state, but I was fairly alert through the whole process. When I called out in pain as loudly as I could, I was completely ignored. In addition, the doctor kept leaning on the intravenous needle in my left hand, and ignored my frequent requests to stop. In short, the experience of the surgery was a nightmare. Fortunately, the end result was successful.
It is now two days after the surgery. While I have some discomfort, there has been relatively little pain. The experience of watching food enter your body through a tube is very strange, but it is not as disturbing as I had, at times, anticipated. The accumulated phlegm from previously inhaled food is gradually leaving my respiratory system, and I am already spending far less time on the cough assist machine. We are also learning how to maintain my raw fruit and vegetable diet using the tube. So the plan is working. About another week of healing, and life should return to something close to normal.
I want to thank all of the well wishers and supporters who called and e-mailed before and after the surgery. Your efforts have meant a great deal to me, and have helped to smooth this latest path of my journey in living with ALS.