| This Christmas was very special because Dan was with us. During this time Dan could not sleep on the floor like he usually did because of the drainage of the bladder tube. He was not happy about that because he was afraid of heights. His father built him a bed in the corner of our bedroom waist high with a rail. We had to keep a close eye on him. We explained to him how important it was that he sleep in this bed and then he accepted it. Everything was going great for Dan. The holidays went great. Dan even rode his tricycle a few times. He was handling being attached to the plastic bag very well. His care was much more involved. I was a little worried about him having the tube in his bladder because that opened the door for possible infections because the bladder, unlike the stomach, is a sterile place. The worry about infections was the reason I never would let him have a feeding tube although it has been suggested. Then, a short time after the holidays, Dan started running a fever. Even with Tylenol and the sponging, I couldn't get his temperature down and he threw up a couple of times. That really worried me. He couldn't keep the Tylenol down. His temperature would soar to a 104 to 105 at times. At that point we packed and headed for Ann Arbor. He still was on Bactrim but it was of no help. As soon as we got to the emergancy room and they checked his urine and sure enough he had gotten a urinary track infection. They took a culture but it would take three days to find the bug he had and the antibiotic that would kill it. In the mean time they tried other antibodies but he didn't respond to them. Myself and family members took turns sponging him. It had to be done around the clock. His Tylenol and Compazine had to be administrated in his rectum. Dan surprised me. He would not let me or the nurses insert them he did it himself. Which in a way was better for him he had no finger nails. He handled himself so good and cooperated with everyone. I really don't think he knew just how sick he was. He was an angel. His temperatures reached as high as 107 degrees at times. On the second day the floor doctor said that I should go to her room on the floor and lie down for a while. She said she would give me a couple of pills to help me relax. I did as she asked. I surely did go to sleep in fact when I woke up I realized I had slept for eight hours. I learned that she had given me Valium. I did sleep better and was able to get my head on straight again. I thought for sure we were going to lose him and I was having a very hard time coping. Dan made it through those three days although I don't know how except through the Lords help. The results came back and there was only one antibiotic that would cure the infection he had and the drug was Carbenicillin. This proved to be a great challenge to get the drug into Dan. I don't think it was the taste. I think it was the smell because every time we tried to give it to him the smell would make him gag. There was no if ands or buts somehow he had to take this drug or he would die. Everyone put their heads together and we tried everything that anyone could think of. Then one of the nurses suggested the we hold his nose until the medicine was in his mouth and then have something ready for him to chase the drug down. We tried even though it was still difficult we managed to get the drug into him. We found that chocolate milk worked the best. One of us held his nose and the other had the chocolate milk ready so that he could start drinking as soon as he swallowed the medication. At times it was very hard to keep it down. There were several times he said that he wasn't going to take it and I had to get tough with him. I didn't blame him, the medicine smelled nasty. The smell gagged me. It was a very difficult time for me all the while he was on this medication but it did cure the infection. I was extremly happy when he no longer had to take the drug, so was he but it did save his life. He was put back on Bactrim and remained on it until the tube was removed. He was in the hospital for about three weeks and then we came home. That was the longest he had ever stayed in the hospital at one time and he had never had to stay that long for the rest of his life. He had the tube in for about two months after the infection. Then I had to take him back and they had to run some tests to see if he was going to be able to urinate on his own. The test proved that he would be able to. I was wondering how they were going to remove the bladder tube. I was soon going to find out. We took him to have it removed and the doctor just took hold of it and gave it a big yank. Dan let out a loud scream and it popped out. I was surprised it didn't do some damage but it didn't. At first urine flowed from the opening. The doctor put some gauze pads around the opening and he said the opening would seal off over the next few days and it did. Dan went back once for a check up. Everything was ok. He finished taking the rest of the Bactrim and Tincture of Belladonna and it was stopped. Life returned to normal for us. We had gotten over another hurdle. I thanked the Lord for getting the whole family through this ordeal and letting Dan remain with his family. Just before they took Dan to surgery they ask our permission to video and take pictures of the procedure for their medical information and books. They said that Dan's face would not be shown. We decided to let them because it might help someone else with Dan's disease. In a way I wish I had asked for a copy of the pictures they took. But maybe it's just as well I didn't. I also wondered after Dan's ordeal why they hadn't given him the Carbenicillin through an IV. They must have had their reasons so I let it go. Anyway, it was water over the bridge and there was no going back. It was over. |