Day 2

We had a super busy day yesterday. We are SO tired. We were pulling out wire after wire and we had a room change...TWICE. I'm still not sure how I feel about it, but 24 hours post-op we moved upstairs to the surgical unit. It was so comforting to have a nurse by her side every minute, I will miss that. It wasn't a fun day for her. She was quite nervous about pulling wires out of her body. She still has several to go and she still has her chest tubes in. They are causing her quite a bit of discomfort. The nurse ordered her some mac and cheese and sherbet, but she only got one bite down. We can get her to sip ice water, but she won't eat.

 Before we moved up stairs they pull of few more things off of her. She insisted on doing it on her own. The nurses would tell her where to pull and she would do it herself. It made her feel better being in control of the discomfort. The one that got me the most was her urine catheter. She told the nurse she was going to do it and the nurse told her she'd let her if she could get it unclipped from a clip holding it in on her leg. She unclipped it,  the nurse deflated it and Grace pulled it out on her own. She's nuts! The nurses ate her up and were all so proud of her. Before we left we had one nurse tell us that Grace would be the Fontan patient that she'll never forgot. We are all in awe at her determination and progress.  We brought her to the floor and got her settled and tried to rest for a bit.  She was given some of her pain meds and became really sick. We were able to get by without her vomiting.

Grandpa and Grandma Hales brought all of her siblings to the hospital to see Jeff and I and have dinner. We all miss each other.

Because we moved floors and the restrictions were different, Grace was able to see her baby sister. They were all so happy to see each other and us. It has been two days since I've seen them. We are so lucky to have my parents to do whatever it takes to keep our family connected. The kids had little gifts they had made her. After they left we had a rough couple hours.  She had the sticker from her catheter that was still on her leg. Her and her dad spent about an hour pulling it and some of the other adhesives off. She hates that part.

They started Grace on her diutretics and she needed to go potty so bad. We unplugged everything and loaded her up. It was quite the production. She struggled so bad and never could go. She really started hurting from a full bladder. Her back was even hurting her. She gave in and agreed when I suggested a diaper. After lots of tears, she finally was able to go and has felt much better every since. On the way back to her bed she volunteered to take a couple steps. We couldn't believe it. This girl can do what ever she makes her mind up to do. We continued with diapers during the night and it helped a ton with the pain. As I was putting a diaper on her, after being potty trained for 3.5 years, I found myself in a moment I had 20 years ago. I was at an appointment with my grandma, the one who had a bad mitral valve and had four open hear surgeries. I remember her doing things that, for most of us, would be very uncomfortable and embarrassing. My grandma just did it. No questions asked. That is exactly how I saw Gracelyn last night. Shortly after, without having talked to my sister,  I received a text from my her, "She is so amazing and a fighter! A quiet, patient fighter! She's like her great Grandma Murray."I thought it was the perfect way do describe her. This is why we gave her my grandma's middle name "Louise," it means "Warrior." Grace is the most sweet and gentle little girl, but she has such a fight in her.