April15

This was the day that started the end of everything.

I got to the hospital about 9, to sit with him for a while before M got there. It was actually soothing for me to be there by myself, with him. I talked to him, I kissed his forehead, rubbed his arm. I pulled up a chair next to the bed, and grabbed his hand. I noticed that he didn't respond in anyway, not his head moving a bit, not his hand. I squeezed it several times but got nothing in return. I noticed his hands were extremely bloated. They'd been swollen before, but that morning they were clearly changed, his feet too. It was indicative of his kidneys slowly starting their shut down.

I was with him for an hour or so before Mike showed up, and then one of my bffs C showed up as well, completely unannounced, but thank GOD for her. She was my rock for the rest of my journey through this hell.

Dr P came in not long after that. I think I mentioned before, but we had really bonded, starting with our first meeting on Saturday. He was young, maybe early 30's, and he cared. It was obvious. When he came in our room, I truly felt like Dan was his only patient. This morning, I sensed something was different the second he walked in. He was always soft and calming with his words, but on this day nothing could calm me. He talked about Dan's progress through the night, same as every other morning he came to check in. Then, he looked at me, actually he rarely took his eyes off mine as he was speaking. I remember just being drawn to him, knowing he had full power to save Dan, and that his words, whatever he spoke were the truth. This will sound odd, really odd, but now that I think about it, he was really my God for those few days. I have to imagine what I felt for him, the trust I put in him, was how people who are religious feel about God.

He looked at me, after that first discussion of how the night had gone, and gently, slowly and quietly told me there was nothing left for them to try. That although they had thought they could see him through this, his body was not responding to the medicines. They'd officially tried everything and there was no hope. And I thought I was going to die myself. His words knocked the air out of me. And I cried and cried and cried. And thank God C was there with me.

He told me that it was time to think about making him comfortable, that we needed to move from treating him to making him comfortable. He gently told me that Dan could live for months the way he was then (on the vent), but reminded me that it's not what he wanted.  And then he came over to me and hugged me. And I sobbed.

Dr P also mentioned that they had sedated him the night before, which is why he didn't respond to me. M asked, after the discussion of turning off life support, could we lower his sedation meds so that he might be responsive. The dr basically said no and that our job was to make him comfortable and it would serve no useful purpose.

After that, in the next few hours we talked about what would happen and when. I was beyond exhausted. Once hearing those words from the dr, I made up my mind that I was going to spend the night. I made some calls, got my kids taken care of, and was in it for the long haul. In the end, as the day wore on and I could barely focus, I asked to talk to Dr P again. I asked if he had any reason to think that Dan wouldn't make it through the night. Not guarenteeing anything, he said that as long as they maintained what they were doing, there was no reason to think he wouldn't survive the night.

His cousin and her husband from New York came in late that morning. I'm so glad she was there. Dan always thought of her more as a sister than a cousin and they connected much better than he and his brother ever had.

All along, even though he was next of kin, M really let me take the lead in making decisions. I knew in my head, as I left him that night, that we would take him off life support the next day. It made sense. It's what he would have wanted. C had mentioned to me that this was just one of my responsibilites...that I was also a mother and I had a job and this could not go on forever. I also heard Dr P's voice telling me once that happened, we might expect him to survive a few days.  So I went home to rest up and get some good sleep, in preparation for the next few days with him, never intending to leave. I had been told on a previous night that I couldn't spend the night in his room. That I could sleep in the waiting room and pop in and out of ICU, but that I couldn't set up camp in his room. Once Dr P delivered the news, I just simply said "once it gets to that point (meaning vent turned off), I don't plan to leave him. Is that ok?" And he gave his permission for me to stay. So that's what I was going to do.