September 15, 2026
Day 5:
Tate had another crisis today. It was milder, and we got her out of it more quickly with meds. Her IT pump was interrogated today as it almost looks like an extreme episode of violent withdrawals. But nothing is really adding up. We have such a great team this week that is working hard at trying to figure out all things Tate. We have no way out of these at home so we need to figure this out here.
We learned today that Tate should be on the right antibiotic. If she continues to fever or if cultures drawn again today grow, they’ll put her on broader spectrum antibiotics.
Tomorrow is a care conference to talk about next steps outside of the infection. The infection is actually the easiest part of Tate’s picture. It’ll include palliative, rheumatology, neurology and infectious disease. We are working with Tate to agree to some more tube feedings. She just isn’t eating much more than bites and nutrition is so important for healing.
This morning I was greeted with a surprise by Rachel, Lily and Hillary. Birthday donuts that spelled out “Roxy.” (See the video in the comments)This is my nickname on the days I’m about ready to lose it. It makes me smile every time I’m called Roxy by a loved face. It lightens the mood and is said with so much love that I instantly don’t feel so alone anymore. The sweet, sweet gesture of planning and presenting these donuts brought tears. Who cries over donuts!? LOVE these ladies.
Keira and I had our together Birthday do-over today. We opened some gifts, and had a nice lunch with Drew and Tim. Our sweet nurse, Rachel, kept Tate company while we were gone for a bit. It was so nice just to get a little time together.