When I kissed my husband good bye Tuesday afternoon and told him I was going to go have surgery but I would be back as soon as I could, I almost didn’t leave. The idea of him being more aware and me not being there for him made me conflicted. Yes, I had wonderful people lined up to stay with him, but they weren’t me. However, I waited a long time for this breast reconstruction and really needed to have it for physical reasons. My left shoulder has dropped, my rib cage has expanded on the right side, and my shoulder hurts all the time. While I was waiting for my turn to go in, my surgeon texted me. He came out to see me, the details don’t matter, but he ended up rescheduling my surgery for next month. I was so happy, if I had canceled, I might not have been rescheduled.
Every night when I go to bed, I hug Duke’s pillow and wish I hadn’t washed the bedding because it smells like chlorox not like him. I cry because while I know my husband will be coming home now, I have no idea what sort of shape he will be in. What version of him will this be? Certainly, he will never be the same, that’s par for the course with COPD. You never get better, you just hope to stall the disease for as long as possible. His doctor made it clear that he probably has jumped from stage 1 to stage 3 COPD, there are 4 stages.
Yesterday, my friend, Nora, said that he wanted to go home, she told me that he was trying to communicate and that is what she understood. Today, he mouthed some words and at first I couldn’t tell what he wanted, eventually it occurred to me that he was trying to tell me that he didn’t want to be there, but I can’t say that was what he was trying to say, it’s my best guess. Who would want to be in his situation? This makes me believe that he is aware of what is happening to him. My eyes are filling with tears as I type this. He can’t come home the way he is now. He has a nasal feeding tube and is on a ventilator, while he is able to move his left arm somewhat, he can do very little with his right arm. He has no control over his legs. He can nod, shake his head, and shrug his shoulders. He tries to talk and sometimes I can figure out what he wants to say, most of the time I can’t. I get angry with myself when I can’t understand what he wants, and I find myself constantly crying. If you just walked in and saw him, you would think, this guy is a mess. He is, but he is miles better than he was.
The doctors say that he has a good chance of getting off the ventilator, his saturation is good, he is on spontaneous ventilation, which I understand to mean that he triggers the ventilator rather than it being on a timer. I don’t really understand the mechanics but what I do understand is that it’s a way to remind his lungs to breath. He needs to strengthen his lungs so he can breath on his own when they remove the machine.
Another issue that he has is that he has been on a nasal feeding tube for a long time, he either needs to start eating or they will do a feeding tube that goes directly into the stomach called a percutaneous endoscopic gastrostomy (PEG). He can’t eat food until he is off the ventilator. My honest reaction? I want to vomit, I want to say NO! please, please, please don’t do that. My throat feels small and my eyes hurt, I want this all to be over.
My world is very small now, most of it is spent sitting next to him and treasuring the small advances he has made and praying for more. I make bargains with my husband, I say, “I will rub your feet every day for you for the rest of our lives, all you have to do is get better.”
I miss my husband, I miss talking to him, I miss listening to him explain computer stuff to me. I miss sharing my life with him.