It was another day full of ups and downs. The big up is that John literally got up out of bed! He took two walks without any high heart rate issues! With Andrew and I each holding a hand, and a team of at least 4 people carrying all his tubes and wires, he walked through the whole unit once and halfway the second time. He was screaming in pain the entire time but he did it.
The plan was to walk a third time in the evening but he was clearly in terrible pain. He feels it all over- his back, his chest, his belly, etc. Part of it is that he has only had that one bowel movement and he’s still clogged up but the other is those awful chest tubes. They wrap around the inside of his body so no wonder he’s uncomfortable!
We’re in that cycle of knowing he needs to walk, so that he can get the fluid out of his chest tubes, so we can get the chest tubes out. But he’s in too much pain to walk because of the tubes.
It’s been heartbreaking to watch him at times today. He’s taking more medicines by mouth and hates it. So many people are in and out looking him over, listening here, poking there, and he hates it. He’s being forced to walk with these crazy painful tubes coming out of his chest and he hates it. We know he’s in a lot of physical pain but we all agree that he has some real fear and anxiety going on- and with good reason. We’re hoping to work with Child Life tomorrow to figure out some ways to cope with that side of things.
Please continue to pray for his fear, movement in his system, and the right pain regimen.