Today started after a long hard night. She wasn’t feeling well because her tummy and gut were objecting to the NJ feed, or her PLE is kicked into high gear after the trauma of transplant…or likely both. After slowing down the feed, they gave her some pain medicine and nausea medicine. After music therapy and a little nap, she felt a lot better. Sarah’s chest tubes are still putting out a lot of drainage (probably also because of her PLE) so they’ve started replacing some of that fluid with plasma proteins and albumen. They also added TPN and Lipids back in since they’ve slowed down on the tube feeds, and IVIG to help with immunities. Still playing a balancing game with all her new meds and the meds that control the effects of those meds. It’s tricky business and I’m so grateful for the amazing doctors and nurses that are taking care of her. Her right lung looked better today, so there wasn’t much respiratory therapy today. But, she sat up in bed for the first time! PT and OT are coming in once a day now to help her get her strength back and teach her how to do things without injuring her fragile and sore chest. She was really tired today and took some good medicine-induced naps.
Some special visitors came to see her today. Grandma Dixon saw her the first time post-transplant today. She has been in Alaska with my sister to help when she had her baby. She brought a special gift that all of my family contributed to…notes, pictures, jokes, poems, and the most touching thoughtful words of encouragement and support. It was fun to look at and read together today. Grandma and Shaunna also made a hospital treasure box for her to fill with little pictures to tell the story of her hospital experience. Super cute project for us to work on later….. Grandma and Grandpa Brown came later this evening and brought some special people with them for a visit. Sister Linda Burton (recently sustained as the President of the Relief Society, a worldwide women’s organization in our church) and her husband. Brother Burton was one of their missionaries when they served as Mission President in Korea when Steve was really little. (Nice to have connections!) We had a wonderful visit, and it was such a pleasure to be in their presence with their sweet spirit of love and compassion. Sarah was pretty tired, but it lifted me and made me feel like the most important mother in in the world…for just a minute. It was really special.
Tomorrow morning, Sarah will have her first post-transplant cath and biopsy to check to make sure the heart is not being rejected, that pressures are good, and make sure the excess of drainage is not from her surgery sites or collateral vessels. I hope and pray things are as good as they look from the outside. I got to watch her echo again today. It was so incredible. I got really emotional, and was so overwhelmed with gratitude and the wonder of it all. I am so grateful and in such awe that I can’t even describe in human words the things I feel when I see that amazing healthy angel heart beating inside her… “Thank you” just doesn’t express it… though I wish there was a way to express it to her angel heart family, to Heavenly Father, to the medial teams, to all who have prayed so fervently for so long…. thank you.