45 Days Post Transplant

We are still hanging in there. Jim said today that he has been home for almost 2 weeks. He is frustrated because he does not feel any better than he did in the hospital. He is still having blood pressure issues and likes to try to pass out alot. Physical Therapy comes 2 times a week. The clinic visit on Tuesday went fine. The pulmonologist met with Jim to follow-up on his RSV. Jim was telling him how weak he was. The Pulmonologist said "Jim, did I tell you that most bonemarrow patients that get RSV are dead?" He is a funny man and reminds us this every time he sees Jim. I think he is in awe that Jim made it through the RSV. He told us that 80% of bonemarrow patients that get RSV die. It is a good reminder because it puts things into perspective. I think he is pretty much saying "chill, you are alive." I just wish Jim could see some progress. He still just feels lousy. Some days he can walk down the hall a couple of times and some days all he can do is use the bathroom and brush his teeth. Obviously he is weak because of the transplant and RSV but the steroids I guess can make it worse. I know some of the meds must be contributing to the weakness and how he feels but how do you know which of the 25 different prescriptions are doing it? Plus he needs all the meds to stay alive right now. So, I guess that is how we look at it. Progress is being alive. He occasionally will have a moment where he feels ok. He calls that "when all the planets are aligned."

My life right now is pretty much taking care of Jim. I have not been to work for 2 months. I actually have a shift scheduled in two weeks and I am actually looking forward to it. I am able to accomplish things at home but cannot leave him alone. That can make me a little stir crazy. Friday night a friend arranged a "girls night" and one of the husbands had a "boys night" with Jim. We saw a chick flick and got ice cream and it is amazing how renewing that can be. Just getting out and having a little girl talk was great. Jim's "boys night" consisted of watching the Jazz game together while Jim layed in bed. Jim loved it. I am sure he is pretty sick of me. He feels like crap and I am the one telling him "do your leg exercises or you won't get stronger, drink more water or I will have to give you more IV fluids, it's time to take a shower, you need to walk more, are you dizzy, take your pills, are you ok, don't get up alone, no you can't lay in bed, you have to sit in your chair, are you passing out again and etc." I joked with him yesterday that he was going to divorce me when all of this was done. He didn't think it was as funny as I did.

The kids are also pitching in. I can't leave Sarah and Nate totally alone with Jim in case he falls or something but they will sit with him. Sarah is also getting proficient in giving IV medication. She has for as long as I can remember wanted to be a veterinarian. She is very interested in Medicine. So, anytime I have something medical she might like, I teach her. She is not squeamish at all. A few months ago she removed the staples from Brendans head after I showed her. Now she knows how to hook up Jim's IV meds, flush the lines and do line care. It is nice because when I went to the movie I started an IV medication and while I was gone she stopped it and flushed the line. She is only 13, but I trust her way more with this kind of stuff then I do the boys. I think it is good for the kids to do some of this kind of stuff for Jim because it keeps them close with him. They can't do the same kind of bonding activities that they did before with him because of his limitations. Sarah and I both have a birthday coming up and the only thing we wanted was to have a day together. So Saturday, Spencer is going to have a bonding day with his dad. I didn't want it to be a negative thing for Spencer like he was stuck home "babysitting" his dad. I don't want the kids to feel like their dad is a burden. Spencer was very cute about it when I asked him. I told him it was a Father and Son" day and I would get whatever food they wanted. Spencer was in our room this morning and told Jim that they "get" to hang out together on Saturday and that he was going to bring up the Play Station so they could play Crash Team Racing together. I know that Jim was happy that Spencer acted like he wanted to spend his Saturday with Jim rather than dreading it. It will be good for them. The kids all are finding their own way in regards to their Dad. They all handle it different. Some of them won't leave him alone and some avoid him completely because they are afraid they will contaminate him somehow and kill him. Some talk his ears off and some sit quietly beside him doing homework. Others simply drop by the room and provide the necessary care. No matter how they act or what they do though, it is obvious they all adore their dad.

Today I AM THANKFUL FOR the bright moments that touch my heart and make everything worth it.