Now, we are back in Fall River - staying with Bev & Gail who have so generoursly opened their house to us, all four of us. Remind me to write a post about what a super-awesome, terrific family we have and how lucky I am. Really.
We got here yesterday, and I was anxious to see Dad. I hadn't been away from him this long since he got to the hospital. In addition the reports from Gail and my Mom had all been good. Gail had been up to see him a few days and always called with good news. He was sitting up, talking with her. Each day the converstaions were better, he was more engaged, more THERE. One day I got two phone calls from my Dad. It was hard to hear him on the phone, so real conversation wasn't possible. But it was still so lovely to hear his voice. There were some dips at night - when he was tired and they gave him medications to sleep. Sometimes he'd been really really confused and kind of dellusional. My brother was there for all of that - it was tough on him to see that, disheartening. On Wednesday he had the feeding tube removed from his nose and a more permanent one put directly into his stomach. We had all hoped he could just do without it altogether, but since he hadn't passed his swallow test this was the next step. It would be more comfortable than the nose tube for him and posed much less of an infection risk. So while not the greatest thing, it wasn't bad news either.
When I got there Friday he was sitting up and looked better than I had ever seen him. His eyes were clear and focusing - he could follow what was happening on television. We talked alot; we laughed; we enjoyed each others company. I pulled out the deck of cards and we played a simple matching game. He did pretty well, but got tired about halfway through, so we took a break. I found out that his EVD had been clamped off that morning and would be removed the next day if all continued to go well. I left that evening so very encouraged.
We went back today and it was even better. First off, the EVD is gone - totally gone! No more tube stuck in his head, no more bag of cerebral spinal fluid dripping slowly and changing color day by day, no more obsessing over if the drain is levelled correctly with his head. When I walked in Dad proudly announced that he only had one more tube in him (in reality it's two, but I think he forgets about the feeding one). It's hard to put into words what it felt like to be sitting there talking to my Dad - and he was my Dad. There are still some moments of oddness to his conversations - sometimes it's hard to tell what's true. For example we told him we were going to Caserta's (a favorite Providence pizza place) for lunch and he started talking about the "Acorn Tap", a bar that used to be right next door to it when he was a kid. He was talking about how they had a giant urinal there - like huge. And something about them auctioning it off when the place was torn down. I did google "Acorn Tap" and Providence but didn't have much luck confirming the existence of the place, never mind the features of the bathroom fixtures (Google only returned one result!). But - oh! - there was so so so much good - I can't really form paragraphs anymore, so here's a bulleted list of highlights:
- We had a long, in-depth discussion of two Star Trek epsiodes from the original series. My Dad is a huge Star Trek fan and has recorded the entire original series on VHS. He knows them all and today we were talking about how the world is becoming more and more computerized. I started talking about "the singularity". Eric then started musing about the overcrowding conditions that would result if no one dies. Dad breaks in with a description of this Star Trek episode about an overcrowded planet. Then I make a comment about how ahead of its time that series was. He emphatically agrees and tell us about another episode, one of his favorites. He remembers all of it - right down to the appearance of Frank Gorshin.
- Another conversation revolved around a book he was reading before all this happened, War's End - a book about the atomic bombs dropped on Japan in World War II. He told Eric and I - in great detail - about the different bomb designs, the different detonation devices. Sitting there listening I got curious and started flipping through the book. I found many of the terms he was using right there. I'm not sure that he was 100% accurate on all of it (I just don't know enough) - but he was certainly damn close.
- We played our simple card games again - matching and putting cards in order. When we started the matching game he wanted to know if there was any advantage to matching a king to a king - he was looking for hints on strategy. I told him it was just a simple matching game. He played willingly and commented that this was the kind of stuff that the doctors would want him to do in rehab. He totally got it that it was good for him. He performed great too. We got through three whole games this time and he held the cards in his hand the whole time.
- He asked to stand up. The nurse and Eric helped him. He stood, he moved his feet around. He sat back down. He told us "I know it's going to take some time. I'm going to stand and walk every day until I'm better" (I'm paraphrasing a little, but that's the gist)
- Eric's girlfriend Liza came to visit. He called her Heidi at first, but then corrected himself. Later he told us "Liza just has to understand that that will happen sometimes at first, but it will improve and go away. I just have to always get Lily's name right. It would hurt her more than it would hurt me if I got that wrong".
- He ate applesauce - the first thing he's eaten in three weeks. They offered him ice cream and pudding, but he turned those down (doesn't care for sweets). They offered applesauce. He said "is it sugar free? Because I only eat the all natural kind" - and that's true. It was the right kind and he ate it all. He told me it was excellent.
Another improvement that I saw today is that he can now recall conversations he had earlier in the same day. Before I got there he was talking to my brother about a character from The Point, Oblio. He said that he and Quinn both looked like Oblio (because they are bald and round-headed). My brother had no idea what he was talking about and Dad said "ask your sister, she'll know". When I got there Eric didn't say anything, but a little while into my visit Dad said to me "Becky, tell Eric who Oblio is". Up to now he's always had a lot of confusion about the present. Even when his recall of the past had been good, his recall of who had visited or what had been talked about was nearly non-existent. So this exchange was awesome.
So now with the drain out they are talking seriously about moving him out of the INCU. He'll go to a step-down unit in the hosptial first and then will move to a rehab facility. Now I'm trying to figure out what consititutes a good brain injury rehab facility. We're looking at Spaulding in Boston as well as Braintree Rehabilitation Hosptial. It seems like things are going to start moving fast now. I love that Dad currently has such a good attitude about the rehab - I hope it sticks. He seems really anxious to get started on it. He wants to get back to work. He desparately wants to see his grandkids. When I walked into his first words to me were "there she is, babyless again!" I so so so wish I could bring them to him.
OK I'm tired, I need to sleep before Quinn wakes for his night feeding. Thanks everyone for the thoughts and prayers - they've meant so much, please keep them coming. We've still got a long way to go, but it seems like a corner has been turned. I'm scared to publish this, scared to be so optimistic, scared to feel any relief. But I'll do it anyway. Welcome back Dad, please stay with us.