From the time of his birth there was never a mention of circumcision nor the need to because it was thought at first he would live a few months at best. For many years there were no problems. In fact he had never had blisters on his genitals. Around the age of ten, he started to have a few tiny blisters around the head of his penis but nothing bothersome, although the opening seemed to be getting smaller as the years passed. I never dreamed that not being circumcised could cause a problem. I did have concerns about the opening and had Dan checked out in the Urology Department in Ann Arbor. The doctor there said that I should use a catheter, lubricate the end and insert it whenever needed to keep the opening from getting any smaller. When he got sore or blistered I used the catheter as I was instructed and things went along ok in that department until
1-25-76 when all HELL broke loose. When we went to bed one night everything seemed normal. Dan didn't have any noticable problems that I was aware of, but an hour or so after the whole family had gone to bed Dan let out a loud cry of pain that I had never heard before. I jumped out of bed and turned the light on and went to check on him. I knew there was something wrong with him, he had never sounded like that before. He was in sever pain for some reason. I asked him what was wrong and he pointed down to his diaper. I checked it and there was a huge buldge at the end of his penis. It was the size of a fifty cent piece. I had to control myself so that Dan wouldn't start to panic. So I called my husband and told him we had to get Dan to Ann Arbor as soon as possible. Common sense told me this could not be treated like one of his usual blisters because the urine was backed up under the fore skin, also it had to be backed up all the way to his kidneys. I knew he was in real trouble and needed medical help that only Ann Arbor could give him. Dan handled the pain like a trooper after the first outburst. I called my mother and made arrangements for the girls as fast as I could. We had no money so we had to borrow from my folks. My husband went to get the car ready and. wouldn't you know it, the car was low on gas and there were no gas stations open. He got on the phone and managed to find one open twenty miles in the wrong direction. I got things around as fast as I could. In the mean time the buldge at the end of Dan's penis split slightly and the urine was started trickling out. That didn't seem to ease his pain very much. My husband loaded the car and I prepared Dan for the trip and away we went. We went to the out of the way gas station because of the time of night, gassed up and headed to Ann Arbor. We broke every speed law on the books but Dan's life was at stake. We never encountered any police during the entire trip. The reason I didn't call the ambulance is because they would have done him more harm than good, even though it wouldn't have been intentional. They did not have the knowledge or experience to handle him because of his disease. They would have treated him like a normal person and that could have cost him his life. When we got to the hospital his penis had closed off again and it seemed like it took forever for the doctors to address his condition. There was a lot of conferring going on. There wasn't input from many sources about Dan's disease, it was unknown territory. We found out the doctors taking care of him had no experience with Dan's disease let alone his problem. The doctors told us there was no choice and Dan had to be circumcised. They explained that they didn't know if his skin could hold stitches. They could find no information for surgery on anyone with Dan's disease. The only thing left was for us to pray that GOD would guide the doctors through this operation. He was in surgery for four hours and they were the longest of our lives. All we could do is see him falling apart on the operating table. This was the one time I could not be with him but my prayers were. The IV line was put in his jugular vein in the left side of his neck. The most significant operative procedure was: circumcision, meatotomy, and panendscopy. The doctors came and talked to us and said that he came through the surgery ok. They said it was difficult to get him circumcised and they had to put a tube in his bladder. There are no words to express how we felt and we thanked GOD that he made it through the surgery. And now for the first time we knew Dan's skin could hold stitches. After recovery and Dan was back in his room, it took me a long time to get up the courage to look at his surgical site. I was afraid of what I was going to see and I was just sick when I looked at him. His little genitials were swollen up so bad he was unable to put his legs together. He had what looked like extremely wide rubberbands imbedded on either side of his penis. They had to put pillows between his knees to relieve the pressure on his genitals. Dan just took all this in stride. He sure was a strong kid. He never complained. Dan was put on Bactrim Suspension as a precaution for infection and Tincture of Belladonna for bladder spasms. After a short time they removed the rubber bands from each side of his penis. Slowly the swelling went down. I was shown how to take care of his bladder tube and in about a week or so we went home. We got home just in time for Christmas which was our family's favorite holiday. |
