OK so here we are - Tuesday Sept 1. I spent two nights in Fall River this weekend and one extra night in Canton. We got back to Somerville last night. So where are we now?
Dad's still awake. He still has the EVD - although they moved it from one side to the other on Saturday (Friday?) to prevent infection. He's had good days and bad days. Some days we go in and talk to him and we can really talk to him. Sometimes he's confused, other times he seems pretty okay. Sometimes he jokes with us, other times he seems really uncomfortable and agitated. He asked me how many pictures I could fit on my iPhone one day. He wanted to know if a Law & Order episode would fit on there. During some conversations I could almost feel his brain trying so hard to heal and make sense of his situation. One time he asked me what he needed to do to "solve this problem", what he needed to be thinking about. He asked us what the password was that would get him out of the hospital. God, I wish I knew the answer to that one.
I've been doing the finances and such for my Mom during this time. It's so strange, sitting there at my Dad's desk, writing his checks, going through his statements and bills. I don't want to be there - it's his place, his stuff - not mine. Thankfully though, Dad is meticulously organized (apple? tree?) so it's a really easy job. The night that all this happened he had returned from a business trip. So I've been working on his expense report from that trip. I mentioned this to Dad and he started talking about how the Memphis expenses were somewhat mixed up with the Manchester and Philadelphia ones - two trips he had taken just previously. He then told me to "have my mother sort it out". Then he joked that if I did that she would probably "shoot him" for "making her do work". It was really comforting to hear him recognize the trips he had taken and talk about them like that.
Monday was my last day at the hospital before returning to Somerville for a few days. I thought that Lily's pre-school started this week, but I was a week off. Let me tell you it was not a pretty scene when I showed up there this morning with a little girl ready for her first day of school only to find the teachers and everyone engaged in "prep week". Lily handled it just fine. I had a complete and total breakdown. I felt so incompetent, so embarrassed. It was like the thin veneer of "keeping my shit together" just came apart in that moment. The reality of how hard it is to deal with Dad's situation while keeping my head screwed on tight enough to take care of two little ones finally caught up with me - right there in the pre-school classroom. I've been feeling so bad about not being fully present for Lily. She's been with someone different every day, sleeping in different houses, beds, floors. And she's been great - so resilient, as kids often are. But I feel so sad that I can't be here for her more fully. I know it's just a blip in her life - it should hardly register. But geez, couldn't I at least get the first day of school right? The director and teachers were totally awesome about it. I still feel like a total moron - but at least they seemed to understand.
Anyway, when I left Monday Dad was not doing so hot. His breathing was an issue again - he sounded kind of awful. They were trying a C-PAP machine for help with his sleep apnea, so we couldn't really talk to him much. He had stridor, a high-pitched sound during inhalation, making it tough to sit by him. He just sounded so not good. They sent an ENT resident down to scope him and discovered that his airway was all swollen. I guess it's common for that to be the case after a prolonged intubation, but he had been off the vent for over a week already and should have healed up. When I left they were giving him steroids to help bring down the swelling. I was really sad to be leaving on a low note.
That night Mom told me the steroids had worked and he was resting much more comfortably. She was going to go to school for her first day of work today, so our cousin Gail went to see Dad instead. She called me just before lunch to tell me that he was doing really well - sitting up in a chair, very alert, having good conversation. So now we are hopefull again - the doctor's seem to think he's heading for a "break" - a point in these cases when things just suddenly get a lot better. Fingers crossed that this week brings good things.