Today has been a hard day. Simon seemed like he felt pretty good for most of the day, but his respiration have been in the 70's and often into the 80's and 90's when he's super active or upset. He was very fussy this late afternoon and it was scary. It took over 30 minutes for his Motrin to kick in and for him to fall asleep. It feels like we're slowly creeping back to the way things were the night we came in.
I want to feel hopeful that he will recover, but I'm moving more towards being hopeful that whatever time he has left is loving, peaceful, joyous, tender, and filled with all the people who love him.
We have a new nurse tonight who we've known for the whole time but haven't ever had as our nurse. She's treating us a bit with kid gloves, bending rules, etc and it really feels like he's dying. I think he may be but how do I really know? This is the most surreal experience. Every day is so different, every hour is so different. I am struggling so much to balance hope with reality and realistic expectations. I want to believe in miracles, but I'm afraid the time for a miracle may have passed. I hope I'm wrong.
Laura and I had a conversation with Simon today. We talked with him about how much we love him and want him to stay and all the things we want to do with him and all the people that love him here. We also talked about it really being okay for him to go if he is done. We told him that we would help him either way and that we will always love him, no matter what the outcome.
I know everyone is sending different energy and thoughts and prayers. Those of you who want to keep on sending the "fight it, you can do this" energy, keep on. Those of you who want to send more "you can go if it's time" energy, do your thing. If you have "I send you no preference, I'll just sit with you in spirit" bring it. He needs a spinning vortex of love to help him get where he needs to go and no one knows where that is so let's give him some of everything.