|Posted by Celeste Winslow on May 9, 2012 at 8:05 PM|
Preston, James, and I have had a very hard week. Sunday, Preston started not feeling well again. His mouth started bothering him and on Monday the ENT noticed a gray spot on the roof of his mouth that was not there on Thursday when they did the surgery. I know every parent is proud of their child and thinks there child is the bravest but I am telling you, Preston truly is. Between the 3 scopes up his nose without a single movement and then the procedure they did on Monday while awake, I don’t know he handles it. The ENT needed to get a sample. She came in, sprayed his mouth with lidocain, inserted a needle into the roof of his mouth, and then took a weird pair of scissors and cut of two pieces of his mouth. He held our hands but that was it. It was numb but he could still feel everything she did and he just laid there. I couldn’t even watch and he was so brave. Preliminary results came back showing that they did not see that it was fungus but he was not allowed to have any food or drink in preparation of they may have needed to go in and do surgery Tuesday.
Cultures from Thursday’s surgery came back Tuesday morning though and showed that the tissues did show fungus in them. This is bad. They ordered another CT scan, this time even more sensitive (smaller slices) with contrast to see how far this fungal infection may have invaded and was allowed to eat and drink but again after midnight, nothing in case we went to surgery again.
The results came back and showed what we were so fearful of. Basically, in order to try and contain the infection, we would have to let them mutilate our son. They would need to remove the roof of his mouth and remove his eye. Our hearts sank. There is no way we could ever do this to our child. We were praying to head into transplant again with a very small chance that we could prolong our son’s life in the next two weeks but sadly this infection happened. The doctors’s gave us the option to go ahead and do a bone marrow aspiration and check and see how his marrow has responded. His counts have been 0 for weeks but we declined. I would hate to put him through another surgery and if his marrow was empty enough to proceed, I would not want to know so that I could dwell upon how close we were. We always wanted to try and do everything we possibly could do to save our son and said when it got to the point where the quality of his life was affected then it would be time to be done. We have reached that point.
Our focus now is to spend as much time as possible with Preston and to make him comfortable. We are not sure how much longer he will be here with us. The doctors said it could be a matter of days or a couple of weeks. They said, especially with Preston, it is hard to predict. Preston has defied so many odds to get this far. We found out he relapsed over 5 months ago and he has stayed here with us much longer than anyone ever expected. He has fought harder to stay here with us than anyone I know. He has had so many obstacles and kept going. He has so much strength; I honestly don’t know he has done it.
Preston was diagnosed at 28 months old. It is over 28 months later and he has fought an amazing fight against this horrible disease and it is not even the disease that will have probably get him, it is this stupid infection.
James and I will have to find peace in this situation. I will be glad he will not have to suffer anymore; he never deserved any of this.
My fear of Preston always passing was that he didn’t know anyone in Heaven. I know that is a silly thing to think about but I was afraid for him. I do take comfort that he knew Aidan and I pray that Aidan will be one of the first’s to greet him when his time comes.
I love you Preston! We love you so much and are so proud of you. Please pray for peace and comfort for Preston.