Two Sundays ago - 8/23 - Dad's pneumonia was under control enough such that they could remove the breathing tube. He had been doing most of the breathing on his own anyway, with the machine just providing a little extra help. I saw in the middle of the day. He was just starting to wake up a bit. He would open his eyes and look at me. He seemed to see me - he moved his lips as if he had something to say. But he was still very in and out. We went back to my Mom's in time for dinner and my brother went to spend the evening with him.
Eric called us at my Mom's to report that Dad was now talking. At first he was a little random - asking for his wallet, worried that the nurse was trying to steal his money as they rolled him over. But then he cleared a bit and asked for Lily and Quinn. They asked him how many children he had he responded that he had 2 children and gave them our names when prompted. He passed his neuro exam (squeeze my hand, stick out your tongue, etc) with no problem. He knew my brother's girlfriend and asked after her parents. At one point Eric called us and put Dad on the phone. He said "Hi Becky". It was truly the best thing I had heard in a long, long time. It was hard for him to talk though - his trachea was beat up from having the tube down there for a week. He was still disoriented. But he was awake - and he knew us.
I stayed down in Fall River that night with Lily and Quinn. Lily spent Monday with her cousins having a day of fun that involved carousel rides and play-dough. Quinn came to the hospital with me and Mom. That day started off awesomely when we got to my car and realized that Gordon had taken Quinn's car seat home with him to Somerville (damn you Graco and those easily swappable base-things!). After some panic, we found a car seat through a good friend of my Mom's and off we went.
It was so so great to see Dad awake that day. We had some actual conversations with him. Of course at first he told us that he was going to sue the hospital because he wasn't sick yet they'd kept him there for 9 days and kept sticking needles in him. He told me it was a money-making scam and that he should be at Charlton in Fall River. It was definitely hard seeing him so confused about how sick he really is. But there was a lot of good stuff too. He talk about seeing Lily and Quinn alot. He got me to run out to the waiting room to take pictures of Quinn with my iPhone. He asked me to bring him more pictures of them - said it would help him alot.
Since I'm writing this over a week after the actual visit - a lot of things have blurred together. Something I forgot to mention in my last post was that the attending neuro had told us that his latest MRI showed that he did not have any major areas of stroke or damage in his brain. So we were all hopeful that perhaps he could recover from this and be largely Dad - that we would get him back. Seeing him talking and asking for us all strengthened that feeling of hope. It was a good day.
Monday night I went back to Somerville - my Mom and I needed to get a little space and Lily needed some semblance of normalcy. I stayed at home for two nights and then drove to Canton on Wednesday to stay with a dear friend who had generously opened up her house to us as a "base camp". I went back to the hospital Wednesday night on my own. Things had slipped a little since I was last there. The antibiotics used to fight Dad's pneumonia left him wide open for an infection known as "C. diff". So now all staff had to be gowned when they entered his room - I started wearing gloves on my visits to protect the babies at home. Dad was still awake, but he was sick with something new and became less engaged, more sleepy. By Friday the renewed hope and energy we had felt from the weekend started to fade. It seemed like we were plateauing again in a new limbo - with no end to the ICU stay in sight.
We talked with doctors again on Friday and they confirmed that his alertness was not like it had been. There was good news and bad. His clinical tests were all good - no more vasospasms, the hydrocephalus was still an issue, but improving. He took a swallow test that day to see if he could come off the feeding tube. The results were inconclusive and they had to keep him on it. No one was really sure why he wasn't doing "better". Current theory was that the c diff was making him feel lousy and his injured brain was shutting down a bit more to deal with that. There were some other factors too that could be playing into it: low electrolytes (not sure why), some medication he was on for some other thing that has the unfortunately side-effect of making one confused.
So here we were again, waiting for things to reach the next level of improvement, waiting to take the next step along this long long road to recovery. Friday night I went home to Fall River with Mom and Quinn, while Lily and Gordon went back to Somerville. I began to seriously wonder how long we could keep up this nomadic lifestyle. I missed our old life - the uncomplicated, easy one that had seemed so complicated before I knew better. But most of all - I just really really really wanted my Dad back.