The current plan is for Tim to start the clinical trial Wednesday and to otherwise keep working on getting better. He's anxious to get back to work but I think we're going to try to get him back in slowly. He gets really anxious whenever anything changes (including leaving the house or adding something new to his routine) but is trying so hard to work past all of that. Any time your struggle to breathe your first instinct is to panic though. He's been amazing about trying to learn to calm himself and is already making significant steps in improving his abilities though.
There are many things that I haven't had the time to fill everyone in about over the past week and I'm actually working on putting more of it all together both for you all as well as for Tim and myself to keep from forgetting. One of those things is that I was told to get Tim's final wishes and to say everything I wanted to get out to him a week ago today. It was traumatizing for me that day and it's been hard for him to hear about and process after. I was able to talk to him about his wishes for intubation with lots of help from Julie Martin (his NP from iTOR) and to let him know how much I love him and that I couldn't be more grateful to have him in my life but i couldn't bring myself to talk to him about what his final wishes were or to say good-bye. It was a combination of not being able to bring myself to tell him that the prognosis wasn't good and some self-preservation as it felt like as soon as I said it, it would be true and I would lose him. Which was and still is unfathomable to me.
I say all of this to urge all of you to have a conversation now with your significant other, parents, etc. about what your final wishes are. It's not a fun conversation to have but I promise that it is a lot easier now than getting into a situation like ours was a week ago. I remember feeling like my world was crashing down around me but I also remember feeling terrified that I may have to plan Tim's funeral and I didn't have a clue as to what he wanted.
We do appreciate your thoughts and prayers and they have been supporting us through the past week. Please keep them coming as we have a long road of recovery ahead of us as we process the events that unfolded and try to process them in a healthy manner. Tim's still inching forward in his physical recovery but he also still has a ways to go as right now he's pretty dependent upon oxygen. He's worked his way up to managing short distances without it already but it's easy to see that he is frustrated he hasn't made more progress and doesn't see how amazing he already is.
Thank you all!