January 27, 2026
Day 18
And….we headed home.
Drew came down this morning to help me get packed up. Tate didn’t have a great night without the PCA, so the sunrise was a welcome sight today. It’s going to take a little time for her body to adjust. She really has been through a lot in the last couple weeks and her body is still fighting a disseminated bacterial infection, healing from a tumor ressection, recovering from ivig and just dealing withthe never-ending chronic. Shes exhausted and just slept through the morning. I picked up prescriptions and ran into so many familiar faces; all expressing so much relief over the biopsy news. I didn’t fully realize until after the fact, the long line of communication that went out in preparation for what everyone was expecting to be a malignant result. Outside of Tates inpatient team and specialists, nurses and therapists, social workers and childlife were all preparing to support us. Plus so many others who support through the zone or the studio, the FRC and volunteers. Its humbling.
I’m not an emotional processor, so it has taken me a bit to catch up. Seeing the emotion in so many others brings it all to the surface. This is our medical family. They have an inside view into our life that most dont get to see. It was a tough couple of weeks. Im so grateful for the sweet people that met us all where we were at.
The last two days have been hard all around. Discharge for a chronic, medically complex and progressive kiddo comes with grieving. We just want Tate to go home in a better place than she is. We’ve done it over and over again. The desire isn’t logical-it won’t happen. But we still feel sad and disappointed when it doesn’t. Sometimes the idea of going back home with the weight of all the responsibility and the struggle to just maintain feels so heavy. And then once we’re back for a bit, we settle into what ends up as our normal.
The PCA DC was also really rough on Tate. She got a taste of more coverage of her chronic pain. We shut it off and basically tell her to go home and deal with it. Forever. It makes me so sad that this is her daily life. She really is remarkably resilient.
Thanks for keeping us company on the latest hospital adventure. There will be more, but we are hoping for a bit of mundane normalcy at home for a time.