Hi Kerry,
I can understand all of your concerns and I will let you know that you are definatley not alone.
Charlies PEG tube always has a small amount of red stuff- the medical oncologist said that this was gases getting out of his stomach. So now I just tell Charlie that he is farting thru his stomach.
Charlie is almost 2 months post tx and he still sleeps the majority of the day. When he was 3 weeks post- he made a fort in the bedroom and didnt get up for days (not even to shower- which is so unlike him- he tried to shower everyday during treatment). The RO said that he just needed time to heal and to push him in small ways- to get the paper, to brush his teeth, to fix a small meal by himself, but this was a normal part of healing. "I took your Charlie to Hell and now he needs to find his way home" those were his words. He also had a fever from the middle of his tx to even now (he will run int the hight 99's. When his fever reached over 100, the medical oncologist ordered a chest x-ray and blood work immediatly- all of which were clear, but the doctor still put him on antibiotics 3 times a day to ensure any infection would be healed- are they giving anything to Stephen?
I also do everything for Charlie, as he doesnt even know the name of one of his meds (I tease him about this), but he has started to flush himself and take out the Kangaroo pump if I am still asleep. I am a little fearful of the days where independance is his own- I will need to go from caretaker, back to just "almost wife" and hope that I can give him back his independance without trying to baby him. But I also dont have children and at 26, this was my first try at taking care of another person whom I love more that myself.
I know Charlie cries alot, because he is scared and for the first time in his life he feels what love is soposto feel like.
Sleeping may be part of coping with this fear. It will get better, with time and love. What do the doctors say about this?
Has he been eating at all thru the mouth? Charlie was eating vanilla pudding, but at 3 weeks post- the RO said this was very uncommon. He got a touch of mucutious back- I think I was feeding him too much because he woke up nausous an throwing up every day for the past few weeks. So I slowed down the Kangaroo pump yesterday and he seems ok today.
Hang in there! And I will pray that things will soon have a sunny side for you and Stephen.