Dark pools (dad)

Its daddy's shift tonight. Nevan had a great day I heard. He actually went for a real walk. His definition of a walk lately is being chauffeured around in a large adult sized wheel chair. Extra space for baby elephant. He had a little to eat and a nap or two. Played games and had smiles with mommy. Maybe the side affects from the steroid aren't so bad... I come in and try and get him to spend time with Nylah but he's not interested. Wants to watch his show. Finally it's time for mommy to get home for the night and get some rest. He's not happy. Wants her to stay. I walk her and Nylah down to the car and say good bye. My poor baby girl. She's been thrown about this past week or so. Sleeping at 3 different houses. Strapped in a car seat for the hospital commute for more than an hour a day. No "wawa" in the house to play with. Fortunately she knows everyone in the family well and they all do a great job of entertaining her. It's not the same though. She's already looked over so much as the second child and now even more so. We owe her some special times in the next few weeks. Hopefully we don't loose our whole summer.. I return to find Nevan hunched over his DVD player. Exhausted! He sleeps for a half an hour before auntie and uncle arrive. They try and cheer him up but it's fruitless. He even gets a new picture of his little nephew baby Elliot. A custom Onezie that says "I love my cousin Nevan". He barely turns his eyes to look. I try to encourage him to show his gratitude. I always do that. Part of the reason everyone comments on how well behaved my kids are. But he's not listening this time. I am not pushing anything right now unless it's necessary. We finally get a firm yes out of him on something. He wants to go for a walk. But I have to carry him he says. Done. 30 minutes and his alarms go off. Time to go back and have nurses do their thing. We get back to bed and it's time to give medicine. He fights me on it. Doesn't like the taste. Im sure none of this is palatable anymore. I try and try to negotiate with him but he doesn't want. I hold him down but he chokes and most of it goes down his face. We were told to let the nurses and doctors be the bad guys for all the tough stuff. So I leave the room and let them force it down his throat. He cries out for me while I'm in the hall. "daddy noooo come back"..... He's the good guy. I calm him down. But I notice blood on the bed. His new PICC line is bleeding at the site. We have to remove a clear sticky bandage over it to clean. It's the size of a $5 bill and pulling off tape is second to pokes on his list of hates. I try and tell him that it would be worse if he had hairy monkey arms like daddy. We use the orange wipes to help remove the sticky stuff. He talks the nurse through... He'll do it, but his way or not at all. It's done. Cleaned. Looks good and rebandaged. Gets a treat from the treasure chest. I had to go to the store and fill it back up from all the treasure he's picked out this week. I get him ready for bed. Read him curious George then close his eyes. He's exhausted. He sleeps until next Vitals check. He wakes just before. He's sweating and crying. I can't calm him down. Something's different. He won't respond to me at all. I get right in his face and it's like he can't even see me. His eyes are glassy and pupils look dilated. They're deep dark pools. It takes me 40 minutes to get him to take tylenol chewables that taste like Halloween candy. Finally he takes, drinks them down and sleeps for 6 hours! The next morning starts with horrible medicine again. I can't bargain with anything. I let the nurses do it and it's better but still traumatic. He naps till lunch. The lunch delivery comes while he's sleeping. Turkey sandwich on bread or chicken burgers with fries? He's four years old. I add some apple slices for desert and call it a meal. He wakes up refreshed and in a great mood. He even jokes around with me. He eats 1/3 of the burger and 4 apples slices. One good side affect of the steroids is a heafty appetite. We enjoy walks and books and a movie before Mommy comes for her sleep over. See you tomorrow buddy. Luv daddy....