We enter the boring phase. G-D please keep it this way. Right now we are really in limbo just awaiting engraphment. This could take several more days to a couple to three weeks before this happens. As we wait we just hope for no bad to happen. No infections or viruses or any illness to come our way. Mouth sores are our biggest nemesis right now. We are still on umpteen million pills and doses of antivirals and antirejection and antifungals and vitamins and pain meds and mouth rinses and blah blah blah blah blah that fill our day. Sometimes I look at the amount of stuff they give him and can’t imagine he has room in his belly for food and then I remember it is Daniel. He is still eating but it is significantly limited and slowing down right now as swallowing is really painful. Unfortunately the hunger is still there. This is very frustrating and a very cruel mind game for Daniel. I feel so bad for him, since I know food is such an important thing to him. Thank goodness he has other things to keep him busy and make the days go by quickly but he thinks I am mean (and tells me so) when I try to get him to eat. This is my job, I tell him. Along with getting him to do his homework and do his walking and breathing exercises and do his mouth rinses. He can get mad at me all he wants. I have grown a thick skin. I told him I need to do all this and I am sorry if he thinks I am being mean but I ned to do what I need to do to make things normal and get him better and home. A mothers job is a thankless one and never done right?
I actually left the hospital for the first time in weeks today. I went to a follow up doctors appointment, three months post surgery for me. Since my first surgery it has actually been 7 months. Thinking about that is quite shocking. I realized I had not been back to the doctor since my actual surgery and cancelled all my follow-ups so it was nice to take care of me for a minute. Not so nice was being in traffic for hours just to get there and back. Haven't missed that. But some quite, football free, alone time wasn't bad. I know I need to get away more often if not out of the hospital then out of the room. While Daniel is doing well I will try better to get out and visit with friends downstairs (if you are healthy), it is just hard to predict A. how long it will last and B. how each day goes, to plan too far in advance. But I will try better.
I actually left the hospital for the first time in weeks today. I went to a follow up doctors appointment, three months post surgery for me. Since my first surgery it has actually been 7 months. Thinking about that is quite shocking. I realized I had not been back to the doctor since my actual surgery and cancelled all my follow-ups so it was nice to take care of me for a minute. Not so nice was being in traffic for hours just to get there and back. Haven't missed that. But some quite, football free, alone time wasn't bad. I know I need to get away more often if not out of the hospital then out of the room. While Daniel is doing well I will try better to get out and visit with friends downstairs (if you are healthy), it is just hard to predict A. how long it will last and B. how each day goes, to plan too far in advance. But I will try better.