October 3, 2020
Marlon had a pretty rough night. Not sleeping much, restless, and uncomfortable. So I was often right beside him in the bed and when I looked at the sweater I had been wearing in the night, the arm next to Marlon was covered in hair. Though you can't tell by looking at him, he is constantly losing hair. He rubs his hands though and has several strands entwined in his fingers.
He has a lot of discomfort in his back and that is from the bone marrow procedure on Thursday. While Peter was visiting today, I took Marlon to the washroom. After he finished washing his hands, he stepped backwards, tripped over my foot (or his shoe), scrambled but crashed to the ground before I could get him. His scream pierced the air. I hit the call button in the room and a nurse came. He was pushed back to his bed. That fall aggravated his back. He said his back was paralyzed however he has been slowly recovering as the day goes on. Last time he went to the washroom he even walked. Any previous time after his fall which happened around midday, he refused, and had to be pushed. I felt so bad. I should have caught him. So close. He is just worn out! And so am I!
So many trips to the washroom, so many attempts and still he is bunged up. So stressful. So uncomfortable. So…
He dislikes the food being dropped into his stomach and because they need to make sure he can tolerate it, we will not be leaving Sunday. In order to be able to tolerate it he needs to ' get the shit out!' (please excuse my language!)
After Peter left this afternoon I did go for a walk and for some groceries for myself. Nice to get out but shortly after getting back Marlon was yelling at me for some reason for another and I was close to tears. He is feeling so horrible, being pushed and challenged in so many ways, and he has started yelling more, like a squealing/chattering, angry squirrel. And it is not really ok but nothing is really ok right now. He is stretched thin and has no reserves.
They have given him all sorts of things to empty the bowels and typically avoid anything going into a child's butt: enemas or suppositories.
He was asleep but I hear his whining again. Poor boy!