Post BMT day 264
+264
Praise report! Our little friend, Autumn, is on her way to Duke to get her thymus. This little lady was born with no thymus which means no immune system. She turned one this weekend and has spent her entire life in the hospital, most of it in the BMT unit for isolation purposes. After she heals from transplant, she will finally get to go home to meet her two big sisters and do all the normal one year old things and catch up on all she has missed. Her mama, Ashley, has become a sweet friend of mine. Keep them in your prayers as they adjust to new hospital protocols, a new team and a new city. We love you Autumn and Ashley!
Blessing #2. I took Tate to see her theater company, NYT, perform Seussical. There were tears and smiles and hugs reuniting with theater kids and moms and her sweet director, Kim, (who has previously gone through her own BMT and daily fights the fight.) They are in a new theater now and it was fun to see Tate dream that one day she’d be back in that stage. I was so proud to see her push through as I knew how much pain she was in. She put on a smile and was reminded how strong she is. It’s been a rough couple days since, but “So worth it!” Doing our best to live “despite.”
Tate has had extensive swelling of her feet and ankles the last few days. Knees as well. So much pain even to touch. Fatigue and nausea continue. Fun fact….we tried THC again for pain. We’ve used it previously for nausea with minimal success. This time, although it didn’t touch the pain, It wiped out the nausea and Tate ate like I haven’t seen in probably a couple years. And kept it down! It’s not something we want to use all the time but nice to know it has its place when we decide to use it.
We have minimal appointments this week as compared to usual, but some telehealth, Pt and our Homecare nurse will come for labs. Today we try a new system with her dressing change. A total pain in the butt, but worth it if it keeps her skin happy.
Kody remains on a ventilator fighting fevers and struggling. They believe he potentially has bleeding and fluid in his lungs and potentially an infection. Keep praying for peace and comfort for his whole family.