Back to Children's Hospital and admitted once again. They did another cat scan and found his ventricles to be quite enlarged and decided that he needed a shunt so one was put in. He also had a med port put in before he was released the first time. He finished radiation in the hospital and got sicker and sicker and they found that his esophagus and stomach were damaged and even so the radiation/oncologist wouldn't admit that it was the radiation, it was. Patrick, unfortunately, finished the radiation and got sicker and threw up small amounts of blood here and there. He was doing somewhat better, or so we thought, around the end of August of 2000, so we took him home. He started coughing up flem constantly and had to go on breathing treatments at home. Well, he kept getting worse despite the treatments so I took him back to the hospital and they admitted him once more. They tried breathing treatments at the hospital and said that he had RSV, a serious upper respiratory virus. He started having problems breathing well so he was taken to ICU and put on a ventilator. A couple days later he was taken off the ventilator and put on just oxygen. They also had to put a drainage tube in his side because they discovered through some testing that he had not only burned damage to his esophagus, stomach, lungs and windpipe, he also had a hole in his esophagus and a fissure (connective tissue) going to his left lung which was allowing drainage from his esophagus into his left lung and a small chest cavity between. He had pneumonia also because of this situation. He had a scoping of his esophagus and then was taken back to the floor a couple days later.
They would have to close off his esophagus, bring a portion of the top of it out of his neck so he could eat soft stuff by mouth. A couple years later they would have to reconstruct a new esophagus for him. He was back on his floor on a Friday afternoon and enjoyed his Dad's visit and then watched Toy Story with me that night. When the movie was over, I told him that it was time to go to sleep and he resisted for quite a while. I couldn't figure out why because he was always very good about going to sleep at night. He woke me a couple times coughing and spitting up flem. I would get up and help him get settled back down and lay back down. The third time he woke me up at 1:30 am on Saturday morning, I got up to find him coughing and throwing up massive amounts of blood. I couldn't stop it and I couldn't do anything but call for a nurse and watch my son drown in his own blood, struggle to take a breath and pass on from this life. The doctors tried to revive him, but it was too late. He was so brave and went through so much hell with the daily finger pokes among other pokes, blood transfusions, blood infections, etc.
Patrick was a character who was fun loving, very sociable, made everyone fall in love with him and was just a very happy joy to be around. He was also very hyper, mischevious and loved to be a little rascal at times, but his smile usually won anyone's heart.
WE LOVE YOU PATRICK AND MISS YOU TERRIBLY!
Mommy, Daddy, Cory, Grandma's, Grandpa's, Aunts and Uncles
There were many times after he learned to undress himself, that we would go into his room after a nap and find him stark naked, diaper removed too, and so proud of himself. He learned how to undress himself very early and could also unbuckle his overalls. I would put overalls on him thinking he might stand a chance of having some clothes on when he woke up, but I underestimated him once again.
He loved to climb in bed with Cory, sometimes even when Cory was still asleep or even if Cory wasn't in bed.
After he had come home from the hospital and was going to radiation outpatient, he had a med port in for the IV medicine they gave to him to sleep through the radiation and for the Chemo that would follow. Well, Patrick discovered how to take the port needle out even though it was covered with Tegaderm. I went in his bedroom one morning, and when I walked in, he handed me the port needle as if to say "here Mom, I don't need this anymore". He had actually got the tegaderm off, pulled the needle out and tried to put it back in. Unfortunately, he was a few inches off, so he had a puncture mark off to the side.
We bought Cory a bike with training wheels for Christmas the year before Patrick got sick. Well, Cory could have cared less, but Patrick was very enthusiastic about it. He climbed right up on it and was ready to go. He looked at me as if to say "Open the door Mom, I'm ready".
Cory and Patrick often liked to take things out of their toyboxes, whether it was Cory's or Patrick's, and climb right in the toybox. Mind you, it was usually both of them climbing in together and they actually fit in together somehow.
