November 8, 2024

It’s a snowy day in CO. Tate was in yesterday for blood cultures once again due to crummy labs and worsening of her baseline the last few days. So far…..no growth!

An almost 2 hour rheumatology moved to telehealth appointment today held lots of discussion about what to do with this 0.4 ANC. I’m always grateful for the conversation our Dear Dr. Moore is willing to have. Because even if these cultures remain negative…the clock is always ticking. Making med choices to protect Tate from disease progression while protecting her quality of life and desire to stay out of the hospital is a tricky balance. We don’t have much left for great maintenance options. But, should things rapidly deteriorate, there are big guns left….mostly just chemo. They come with risks/SE that we’ll save for those rainy days. Monday will bring repeat labs if we’re able to avoid admission before then with clean cultures.

The discussion the last couple weeks have circled around another surgery…placing a second feeding tube port in Tates abdomen, just for a J tube into her jejunum. Currently she has a combination G/J into her stomach. This would leave her with a separate G and a separate J tube site. Easier to manage at home. Despite recommendations, we aren’t ready to step forward just yet. Surgeries are never an easy option for Tate.

The girls had an amazing time at the Sabrina Carpenter concert last Friday. Fun photos to come!

#tatestribe

#gritandgrace

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November 1, 2024