Still thinking things through

I seem to be stuck on the decision to remove the ventilator from Trevor. I wonder if that is like euthanasia but I know it isn't. We didn't give Trevor anything to specifically cause his death. In most senses he had already died physically. We were actually keeping him going beyond when his body failed. The ventilator gave us time to make sure that his body couldn't recover. It gave us 5 days we wouldn't have had with him had I not gotten him to the hospital in time on that Wednesday or if the drs there hadn't been able to get the tube into him. And, after being reintubaed on Friday it gave us 3 more days. Three days to realize that Trevor's body had come to the end of it's strength. It gave us time to have that lovely party for him on Sunday. There was such an outpouring of love in that room. People took time out of their preparations for Christmas to come in on an icy Sunday afternoon just for Trevor. When I look through the pictures of the people giving him gifts I can see how they loved him. It gave us 3 days to realize that we needed to say goodbye to him. I know we all expected this to just be a false alarm and that he'd do just fine on Monday when the tube came out. He'd seemed so healthy up until that Wednesday afternoon. Sure there were signs now that he wasn't feeling that well. But certainly no signs I saw that said he was dying.

I keep wondering about the decision to take him off the ventilator. Yes, he was living and breathing on it. But the dr said that his heart was so weak that it wouldn't support him for very long even on the ventilator. As I look at the pictures taken of him in the hospital and at Canuck Place I realize that choosing to have the tube removed rather than just sitting in ICU until his heart gave out gave his last hours so much more dignity and comfort. If he'd stayed in ICU he would have been in a fishbowl of people staring through the window surrounded by beeps of machines and only seeing iv pumps near his bed. At Canuck Place we were able to put up the lighted hockey player and other hockey paraphenalia on the wall where he could see it just like it was at home. There were no beeps of monitors. He was able to be dressed. And, most importantly he had no tube in his mouth. It allowed him to spend his last hour able to move his tongue around in his mouth. It allowed him to be hugged by me just the way he liked. That hadn't been possible with the tube. Instead of beeps of monitors, he had people singing around his bed and once the tube was out I put on his favorite Pete Seeger music. I know that brought comfort to Trevor. Pete always had. Removing the ventilator gave his body a chance to let us know if it had more left in it. Unfortunately it didn't

When I spoke with the respirologist before we transferred him from the hospital he told me I shouldn't have any second thoughts or doubts about taking him off the vent. I told him that I knew I would. I think those are surface doubtst and that deep down I know it was the right and only decision for Trevor. I still have some doubts about the decisions made for Kayda too. She had been clearly dying for months but still I wondered if I couldn't have done more to keep her going longer. But, like with Trevor, I've come to realize that their bodies had done as much as they could. Keeping them alive would have involved lots of intervention and monitoring and wouldn't have been pleasant for them. It would have only been for me. I realize that for both children, I (and all the others involved in their care) chose to give their end a quality rather than increasing the quantity of days they lived. I have to keep reminding myself that not one person that was consulted about Trevor's condition spoke up against removing the ventilator. The medical staff clearly were opposed to keeping him on it as they knew the true state of his body and knew the outcome of his condition.

As you can see, my mind goes over and over all this stuff. I know it will continue to do so. Writing it out helps and I hope that my journey will help others walk this horrible path of having lost their child.