Where we are

This has not been a good week. Starting Thursday, Earl has taken a bad fall each day. His ammonia is really high. His breathing became irregular Monday morning about 3:00. Thanks to good neighbors, I took Earl to the ER while Kathy stayed with Mary. As suspected, his ammonia had gone up even more. The medicine that they give to bring it back down, causes intense diarrhea. Earl doesn't like it (who would?) so it is hard to get him to take it. Generally liver disease patients are on it to keep their ammonia in check. Earl has been on something else because he is so sensitive to it. Now he has no choice. However, he has been on it for two days with no apparent change.

We saw the oncologist yesterday. The long and short of it is that Earl may only have weeks left. The uncontrollable ammonia is yet another indication that he is suffering liver failure. We are starting Community Nursing Services today.

I wasn't expecting the end to come so quickly. Earl seemed to be doing really well during our trip to Seattle. I thought for sure when we got back that his bilirubin would be down when we got back. The bilirubin hasn't come down and the ammonia has risen. Earl doesn't sleep much. Trying to get him to stay in bed at night is a challenge. When we were at the doctor a week ago, Earl mentioned that he was afraid that he would die in his sleep without being able to say goodbye. Turns out that generally when you have liver failure, you just go to sleep and that's it. I think that Earl is avoiding sleep because he doesn't want to die. I don't blame him. I would be the same way I think. They have at least temporarily taken him off his chemo pill so we can find out if it is, somehow, causing the raise in the ammonia.

I talked to Mary about all this yesterday. Her first response was that she doesn't want a new daddy. I told her that it took me so long to find her daddy and I really doubted that we would have to worry about that any time soon. Later when we talked about the good and the bad of her day she said that the good part was painting Wendy's snow. The bad part was finding out that her dad is going to die. I have been wondering if she was really comprehending all of this, I guess she does in her own 7 year old way. Meanwhile, she is sad that because he is so sick and has no immune system, she doesn't get to have friends come over. We didn't let her have many friends over as it was, now it is even harder because she can't have any play dates at our house.

Each day seems to bring new questions and new answers. We are thankful for each day that we have with Earl. I really wanted to have a wagon train reunion for him before he got too sick, now I'm not sure how we could ever get that to happen. Our mailing list is buried on a zip disc and we no longer have a zip drive. I don't know how many of the addresses would even be valid anymore. We haven't mailed out a Mormon Trail News in years.