Saturday, September 27, 2003

Saturday, September 27, 2003 10:24 PM CDT

Luke here...Susan is feeling better, but we didn't want her around Nathan today. She drove down to the Springs this morning to see Julia and her mom and to be there for the transition to our friend Lisa taking care of Julia. Hopefully she can see and spend some time with Nate tomorrow. Where to start. Nathan had another pretty good day, considering how bad he feels. He was in obvious pain this morning. His cheeks and throat are swollen and he was drooling out his saliva instead of swallowing. We got some more morphine in him and the doctors decided to start a continuous drip. It was easily the right thing to do. He opened his mouth for the doctor this morning and she said he didn't really have distinct ulcers in his mouth, but that the entire lining was inflamed, swollen, and in some places peeling away. He has drooled a little blood. She also said that it is likely that the lining of his entire digestive track from mouth to bottom is in the same state. When he swallows medicines it obviously causes him pain in his mouth, throat, and stomach. As the drip got started he slowly started to feel better. Mostly he slept today. I think the sleep is his reaction to the pain and stress and the morphine helped. He was awake for about 2 hours this morning and then for an hour or so in the afternoon, and then he slept until about 6:15pm when I woke him up to give him a bath, do his meds, line care, mouth care, and get him settled down. He fought through the sponge bath but then settled down. His meds hurt him, so we gave him a little extra morphine. He was good for his line and mouth care and when I finished I told him that there would be no more "mouth" meds or mouth care and he smiled at me. It was great to see him smile. He was then in the best mood he has been in for about three days and quite wide awake and alert. We watched some movies (He is on a Monsters, Inc. kick). I left him wide awake at 8:30pm. He was lying back with his hands behind his head watching tv. He was sad that I went, but good about it. I felt extremely guilty leaving him when he felt better than he had in days, but I am beat and needed some food. I'll call the nurses soon to see if he settled down.

His night nurse was his nurse last night too. She said that he looked more comfortable now than he did at any point last night even when he was sleeping. I'm happy to be on top of his pain now. There shall be nothing entering his mouth tomorrow without a good extra shot of morphine first. Today was day 2. The docs say that days 2 to 7 are probably the worst. Hopefully we can stay on top of this pain until his cells find his marrow and his counts come up. If you are looking for specific things to send positive thoughts or prayers about then they are (1) That his transplanted cells quickly find there way to his bone marrow space and start producing beautiful, functioning, and cancer free cells and (2) That while we are waiting for his cells to do their work that he can be fairly comfortable and kept out of horrible pain.

Hmmm....Have I covered it all? I'm sure I'm missing something. Based on tonight, I'm optimistic for tomorrow. I'm hoping that he can have a few more smiles and hopefully a few more waking moments acting like himself.

Tomorrow is the second normally celebrated day to fall during transplant. Our anniversary was last Saturday. Tomorrow is Susan's birthday. I'm guessing that her feeling well enough to visit Nathan in combination with a relatively pain free day for Nathan would be more than she could ask for.

Transplant is obviously horrible and as I re-read these posts I realize how horrible it all sounds. It is nasty, but Nathan is a real trooper like always and holding up well. We are hanging in too. I can't get too upset about things when I know that this piece of treatment is temporary and so crucial to Nathan's chances long-term survival.

Thanks for getting through this verbose post. A good friend told me that my posts read almost like therapy for myself, and I suppose in some ways they are.

Luke again. About an hour later. When I left Nathan he was wide awake, so I just called his nurse to check in. I guess he watched a couple of videos by himself and when she came in to ask him if he wanted another he said, "No. I think I'm ready to sleep now." and rolled over and went to sleep. She left me by saying, "He is an angel. I just love him." Now I think I can roll over and go to sleep.