Fontan Recovery Day 1–PICU and to the Peds Floor

I knew today would probably be pretty hard as Asher came off the morphine that they put in his spine during surgery and began to feel the pain of the surgery more. We did have some sad moments, but also some good happy moments too.

The night was a decent night, with Asher waking up every hour to hour and a half. Sometimes he woke up on his own, and other times he woke up when the nurse came in to do vital signs, to give him meds, or to empty his pleural caths. The worst was that he still couldn’t drink anything, and each time he woke up, he said his mouth was dry and he asked for water. He also had a hard time any time he had to cough, as it hurts his chest. The doctor brought in a heart pillow for him to squeeze when he coughed to help with the pain.

In the morning, around 5:30 a.m., I think just because he was uncomfortable in the bed, Asher wanted to sit up in the chair. The nurse got all of his cords and wires together so that he could move him to the chair. Once Asher stood up to move over though, he realized how much it hurt to move. He got in the chair and then didn’t want to get out. He sat there for an hour and a half, I read him some books, he had an x-ray, and he was finally able to take a few sips of water.

When the nurse shift changed, she helped Asher get back in bed, where she removed his arterial line and his catheter. He seemed to have more pain getting the catheter our than the art line. They also switched over his drainage tubes from big tubes draining to a pump on the floor to small bulbs that just hang from his chest. He tried to rest for a minute, and then child life came in and she brought him by a wii, which he tried to play for a bit but it was hard with only one hand. Shane helped him hold the controller and turn so he could play for a bit.

 

My mom brought Madeleine up to visit, and Asher was happy to see his grandma. I got time for a short run on the treadmill here, which felt good. I played with Madeleine a bit in the lobby, and while we were out there, they moved Asher down to the peds floor.

The peds floor is much more private and a lot quieter. He was pretty tired by the time he got down here, had to walk from his one bed to the other, and then had some more tubes drained. He ate a bit of applesauce, but then he was upset too because he had to cough but it hurts still, but he finally got it out and was able to take a good nap. I took advantage and took a nap too!  His brothers had sent up some fun cards, all on orange paper of course, that we hung on the wall in his room for him to look at.

       

When he woke up, he was feeling the best I’d seen him yet. He blew some bubbles, which is something he is supposed to do to get him taking bigger breaths, and we played a game of bingo with the hospital. Asher was able to just watch it on TV, and cross of the items they read on his card as he watched. He won a bingo in the first round, and so I went upstairs to pick out a prize for him. He was excited to get a Lego junior police and motorcycle set – and the motorcycle was even orange! Shane and I helped him put that together, but by the end he was starting to be in pain more, had to cough more, and was getting tired. His dinner came up then, so we got him to eat at least a little macaroni and cheese, and then he fell asleep after the doctor gave him some oxycodone. The nurse was also able unhook his fluids from his central line since he was drinking enough, so we just have to make sure he keeps drinking.

       

It’s hardest when Asher has those moments of pain or fear.  He is getting more and more tense when the nurses come in the room because he doesn’t want them to do anything to him, and when he is in pain he cries, “Mama! Mama!” over and over which just about breaks my heart.  I have been able to keep it together good for him though, reminding him to breathe when he is sad or in pain, and reassuring him and talking him through the hard parts.  Hopefully each day things will become less and less painful so that he doesn’t fear the nurses coming in anymore, and so he can move around and be more comfortable.  I knew these first few days would be hard! 

 

Asher getting some rest after eating a little macaroni and cheese, and Shane trying to get a little nap in the evening since he’s on night duty tonight. 

Asher rested after eating a bit of dinner, and then got a nice sponge bath, new linens, and some medicine before I headed home for the night.  I left him in Shane’s hands, who was reading him some Elephant and Piggie books before going to sleep.