Granny and the brothers came for a visit yesterday afternoon. They couldn’t believe how quiet and still Rachel was. 🙂 Granny said, “I don’t think I’ve ever seen her this quiet before.” She did perk up a little bit laughing and throwing stuffed animals at Dad, Caleb, and Titus. Then we made her get in a wagon to go show the boys around the floor. She was not happy about that, but we needed to get her sitting up some. She was a wagon full with her chest tube containers and oxygen tank (she’s still on oxygen due to the pneumothorax). She was pitiful in the wagon and kept trying to slide down where she could lay down. We rode around a few minutes. After we put her back in bed she slept for a couple of hours. She walked to the bathroom yesterday afternoon.
Here she is pouting in the wagon because we made her go for a ride. Can’t upload photos from today, but she looks much happier.
I enjoyed some time with the boys. I took them down to eat in the food court, and we walked around outside some. Tommy took the boys home around 7pm. Caleb was sad when it was time to go.
Mom stayed with me last night. We had a good, restful night. We did have to get Rachel up to pee at 11pm because they were going to have to put her catheter back in if she didn’t go by 11:30pm.
Yesterday Rachel could have popsicles, Jello, and Sprite, but she didn’t want very much. This shows how bad she was feeling. At home she pretty much eats non-stop and asks for popsicles all day long. She kept asking for a hamburger, but I told her that she had to show them that she could eat popsicles and jello before they would let her have anything else. She was having some problems with nausea. In fact, she has complained more about her stomach hurting than her chest incision.
This morning I told her that she could have a popsicle for breakfast, but she didn’t want one. She did want some water and ice chips as soon as she woke up. She drank half a small cup of water and a few spoonfuls of ice chips, but then she threw it all up. The nurse gave her some medicine for nausea. She went back to sleep for a few hours. Since she woke up she has been eating and drinking constantly. She drank some water and ate ice chips. Then she started eating crackers and just about inhaled 5 of them. Then I asked if she could have some graham snacks from the snack bag my friend Brenda packed for us. She ate all of those, asked for more, and ate a small pack of shortbread cookies. She’s also talking more and becoming more demanding. 🙂 Starting to be a more like her old self.
A doctor and nurse practitioner came by about 10:30am. They said that her chest x-ray this morning showed that the pneumothorax had filled with fluid. He said that this wasn’t good but is expected with this surgery. They tend to have problems with fluid because of the changes of pressure due to the drastic change in circulation. The plan is to do an ultrasound to make sure it’s fluid there and not just some trick of the x-ray. Then they will take her to CICU to sedate her and drain it. She will also likely get one of her two remaining chest tubes out today. The doctor said that this is pretty typical of kids who have the Fontan surgery. They look great and are progressing great, but the fluid build-up keeps them in the hospital. So we will likely be hanging out here a while longer.
Doctor came by at 11am to do ultrasound. There is a pocket of fluid in her chest cavity, so she has to stop eating because they will put her to sleep in CICU this afternoon about 2:30 to drain it. This doctor also said that this is typical with this surgery as her circulation adjusts to the new way things are hooked-up inside. She will come back to the room after they are done.
She’s not too happy about not being able to eat since she had just started feeling like eating. We’re watching movies and playing with paperdolls. She’s been awake a lot more today.