January 29, 2026
It’s funny how even getting back home takes a little time to adjust. Reorganizing meds, getting refills, adding in the IV antibiotics, getting all the appointments back on the schedule and for Tate, sleeping alone again, all take time.
Wednesday we had an appointment with rheumatology. The discussion really surrounded around next steps and planning a care conference with rheumatology, neurology, hematology and special care. There is concern over Tates blood clotting and also the neuro symptoms and brain changes that we really didn’t address inpatient. I pulled another clot off her central line today. I was hopeful that her clots had something to do withher old line, so today’s clot was disappointing and concerning .
Tate needs iron infusions, but iron feeds bacteria, so she’ll need to wait at least a month to finish the iv antibiotics.
Tates Homecare nurse will come draw labs tomorrow for Infectious disease and next week we’ll meet with them and resume therapies.
Neuro with rheum has wanted to do Botox for her migraines as well as plasmapheresis to “clean” Tate’s blood from all the autoantibodies. But currently it feels like we need to give her body some time to just see where and how she lands. She really isn’t feeling well which feels frustrating to Tate especially as she’s into her 3rd week of IV antibiotics.
Her surgical site is healing well. We’re watching a fluid pocket closely for infection, but currently all seems to be healing pretty fine.