Yes, it's been a while. To say "I've been busy" would be an understatement, but then again, isn't everyone busy??
Tom is at home doing his best to get stronger. He still has a lot of fluid from his most recent hospital visit (Wednesday, September 26 through Wednesday, October 3). He also has a large skin tear and large gash that "appeared" while in the Emergency Room on September 26. By the time Dr. Rosen was able to get a look at this latest wound, it was too late to stitch it up. I have been trying to keep it clean and covered at home but it's on the same leg as the previous wound and near his knee so keeping a bandage on is very difficult - especially when tape cannot be used (it further tears the skin). Tom has an appointment with Dr. Rutland tomorrow afternoon so we'll get some blood tests run to see how things look.
My trip to Italy was "fantastico" - thanks for your prayers. It was good to get away and bike through Tuscany! I stayed in touch via e-mail and became concerned when Tom stopped responding. Even though my parents and Tom's sister Cathy, tried to keep the news that Tom was in the hospital a secret, I found out. It was difficult, to say the least, but I knew Tom was in good hands and where he needed to be. At the time I thought it was just his ammonia level again. But, some infection (in his other leg) might have caused his blood pressure to drop. He was sick enough to land in the ICU for a few days and the doctor told Cathy it was "hour by hour" that first Wednesday!!! We've been through this so many times, I'm not sure I would have believed it - Tom is so resilient and has such a strong will to live, it seems he can survive anything. It still breaks my heart that he has to suffer so much.
Fortunately he has been at home to watch the construction of a massive deck on the back of our house. It's much bigger than I thought it would be but it's also very nice! We struggled with the design - have a ramp or not and where to put it. Tom woke up two mornings after he got home and had the best idea yet - we new have a ramp and it actually looks integrated into the deck - not so "handicapped" looking. Today they will be removing a window in the kitchen and replacing it with a sliding glass door. This was also Tom's vision when we started the kitchen remodel. It's been good to have him take charge of these projects and see them in progress. Of course, one thing leads to another so he's moving on to new landscaping for the back yard.
Tom's MELD score is currently 17. That includes 3 exception points that he will have until January 2. I don't know if UAB can re-apply for exception points after that or not. He's still pretty low on the list with this score but we keep praying . . .
Tom has an appointment at UAB on October 31. This will just be a status appointment but at least he is getting in front of them a little more often. I'm really hoping most of this excess fluid is gone by then and he can move around a little better. I know they would like to see him walk into their office instead of using a wheelchair. That's a tall order considering what he's been through and it's a big place to navigate. I know Tom will do all he can to prove he is getting stronger.
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