Chemo - Round 4

Last week we had a meeting with the doctor and some members of the hospital staff. They wanted to discuss some ways we could all assist in making Joshua's hospital stays a little easier on him. Preventing another episode of his needle getting pulled out was the main concern and also they didn't want him just sitting in bed all day long. I suggested that one thing I think would help was if a member of the staff comes in and can see he's upset to have them come back a little later when he's calm. I told them that when he's already cranky or in a bad mood and he's forced to have an exam or his vitals done that it just causes him to become more angry and uncooperative. We got off to a pretty good start Monday. This is our longer week, but Joshua gets the chemo every night instead of continuous, so we can leave the floor and go on adventures during the day. When he gets his chemo it is also accompanied by lots of extra i.v. fluids, this makes it harder on him because he constantly wakes up to go to the bathroom. Last night after wetting the bed twice, the nurse put a diaper on him, the meds build up in his urine and it's not good for his skin, even diluted it can still cause a rash or burn. I had to change the diaper in the night, but I made the mistake of not taking it off before he was fully conscious in the morning. When Joshua woke up and discovered his was wearing a diaper he was highly insulted and infuriated, who wouldn't be, right? He ripped off the unwanted, unsavory attack of his dignity and threw it across the room, then he started huffing and brooding. If I tried to talk to him he just screamed at me, so I backed off to let him cool down. I turned on the t.v. and he looked away in protest, but he slowly started watching the program and soon was smiling and giggling at the show. After a while Joshua turned and saw me watching him, suddenly remembering that he was supposed to be mad, his smile quickly turned to a scowl and he growled at me, then turned the t.v. off. The hospital has several school teachers on staff to help kids keep up with their school work during treatments. We met the teacher, Miss Craig, on a previous visit and she was impressed that Joshua already knew all his shapes, colors, numbers and alphabet. Before we ended up in the hospital I was working with him on writing. Miss Craig came to see Joshua in the afternoon, by then he was playing a video game. He, of course, wouldn't cooperate and let her read to him even though she brought a Spiderman book. Finally, after some gentle persuasion, he permitted me to read him the book. The teacher told me there's a schoolroom set-up with computers and a mini-library on the 5th floor. She realized that trying to work with Joshua in our room with so many distractions is almost impossible. I think also is the fact the our room is like his mini domain and he doesn't like so many people invading his space. So, the plan for Thursday is to see if we can get him out of the room and down to the schoolroom. Joshua has turned into my midnight snacker. He fell asleep in the late afternoon, and woke up at 11pm and wanted to eat, he decided a meat sandwich with orange cheese would tickle his fancy. I saved his turkey sandwich from lunch(Yeah! 5 points for mom!), but of course, it had no cheese (minus 4 points!). They have cheese in the little mini-kitchen on the 7th floor, but it's string cheese, which is unacceptable, so in order to earn back my points, I was instructed to run down to the cafeteria to retrieve 2 slices of cheddar cheese. Upon my speedy return, he gleefully ate his sandwich.