September 25, 2026
Day 16
Tate was pretty bummed when we learned this morning we weren’t going home today after all. She said I jinxed it when I threw some things into my bag before we had discharge papers. The photo is her adjusted mood…a smile with a thumbs down.
When we came in a couple weeks ago, Tates endocrinologist was worried she wasn’t absorbing her oral steroids, so moved her to IV. A week or so ago, after the care conference, Tates big gun immunosuppressant level was tested and came back at basically zero. It was believed it was low due to the iv steroids. It was re-tested along with a level on her other immunosuppressant as Tate’s rheumatologist was worried it wasn’t just the iv antibiotics as Tate had other unfavorable labs come back showing her lupus is active. Not absorbing the immunosuppressants puts her at risk for organ damage from her autoimmune disease as well as just feeling crummy.
The big gun came back stil low but better than before and during the night, that second immunosuppressant med level came back at about 15% of what it should be. This one has a very long 1/2 life and definitely isn’t affected by anything that happened during this admission. Tate was still on iv steroids as of this morning. The concern is poor absorption when moving to oral to go home. Due to her adrenal insufficiency, Tate can’t live without steroids. So….we’re here to transition to oral and see what her body does with it. If she’s also not absorbing those, we’re looking at a much bigger problem with how to handle the steroids and the big question of what else is she not absorbing!? Either way, the immu immunosuppressants will have to be handled through rheumatology and GI will likely get involved too. Tate hasn’t had a super healthy GI system since Behçet’s disease caused damage with all the ulcers pre bone marrow transplant. Bmt was also very hard on her gut as are developed graft vs host disease. She isn’t new to GI issues, thus the GJ feeding tube, long history with TPN and lipids and central line for fluids. But med absorption is something we’ve always been able to muddle through.