The day before that, we had gone home happy because, after many hours of not peeing, Will was starting to go like crazy. It seemed to prove that things were working again and that, like every time before, he would face down a challenge and recover. When we returned that Friday morning after our first full night in our own bed that week, he had faced another long stretch where he didn’t pee. As the day wore on and he didn’t pee or respond to any number of other things, our hopes dimmed. The doctors, who had been upbeat about Will’s prognosis the day before, seemed defeated. They pulled out all of the stops, but told us they were really worried for him. Soon, Mary and I were calling our parents to say they should come if they wanted a chance to say goodbye to their grandson and we were trying to prepare ourselves mentally for losing him.
I’d long held out hope that Will’s autopsy would show something that would explain it all. What I was looking for, of course, couldn’t be explained by medicine, because the questions I have really are unanswerable. That said, we didn’t learn much from the report that we didn’t already know; nor, it seems, did the doctors. But it was helpful for them, because the report confirmed that the things they thought were wrong with Will actually were wrong, and that the treatments they were doing were the right ones. In that last week, however, he simply faced too much. Dr. Colaizy said it was her opinion that the chylothorax (the leak in his lymphatic duct that was filling the area around his lung with fluid) is ultimately the thing that proved to be too much. That had pretty well resolved itself by that last week, but the damage done by not having food for all of that time, including damage to his liver, was too great. In that last week he developed an infection that caused him too many problems, and as they stacked up, Will lost the upper hand. The report details what is called a multi-system failure; essentially, his body was shutting down. That Thursday rally was a strong little boy responding a bit to everything the doctors had to throw at him. By the time Friday rolled around, the infection had more damage to do, but he had nothing left.
In the end, what the report does is to reinforce what we already knew about Will – he was one tough little guy. The litany of problems in the report is staggering. Most of the things listed are problems that developed in those last few days as the infection took its toll, and don’t really accurately reflect his condition for the bulk of his time with us. But knowing the totality of what he faced those last couple of days, and the poking and prodding and constant attention that it required from the nurses and doctors, I’m amazed that he still was able to grab a finger when offered or just to look so peaceful when he obviously was hurting.
That last night, the doctoral fellow who was overseeing Will’s care was trying everything he could to get Will to respond. But as his blood pressure continued to drop and his lungs grew less and less responsive, it was clear that there was little left to do. After Will’s last x-ray, the fellow showed me the image and said, “Dad, it doesn’t look good.” He then said that there were things they could do to keep Will going until morning, but it would essentially be to give us a bit more time with him and to postpone the inevitable. We chose to let him go, and I’ve said here before that it was the hardest thing we’ve ever done. But seeing this report, I know it was the right choice. Will fought hard, and no one gave up on him – not us, not the nurse and doctors; no one. But when it was time, we did what we needed to do
We added this report to a stack of things related to his stay in the NICU that we may or may not ever look at again. It is an understandably clinical look at the end of our son’s life, and we’re not eager to revisit that. I’m glad we have it, these facts and figures that put his struggle into context. But that’s not what Will is to us. Will is in the photos we have of him or the e-mails sent by family and friends to share our joy or the countless memories we have of being with him or even this blog. He is that feeling of love and longing and pain and joy that we carry around with us every minute of every day.