January 11, 2026 #2
A very short night makes for a very long day. Typically Sundays in the hospital are pretty low key, but our day was busy.
LOTS of conversations with purple team, rheum, infectious disease and we’ve now added pulmonary to our arsenal. BMT is being pulled back in as well in the event this isnt bacterial .
It was a lot emotionally and mentally. There’s significant concern that the multitude of symptoms we’ve watched progress over the last few months are related to this darn bacteria that grew in cultures in December. It took until a few days ago to grow out the antibiotics it’s susceptible to….from Decembers cultures. It’s a bugger! Very, very slow growing and requires multiple big gun antibiotics to treat for a very long time. What we’re currently looking for (or to rule out,) is a NTM mycobacteria that settled in Tates lungs, and infected her blood and central nervous system. To confirm this or to rule it out, requires lots of scans, labs, tests and procedures .
This bacteria is found in soil and water. It’s everywhere. Healthy people have no issues. It’s not common to cause infection except in the rate case of immunocompromised individuals, which unfortunately fits Tate perfectly.
Tate had another CT of her pelvic area tonight. G tube for the win to get 1/2 the contrast down. Thankfully that was enough.
Tuesday is a full body and brain MRI under sedation and a bronchoscopy with a wash out to gather cells for testing. Some of Tates nodules are attached to her lung wall, so if they move to biopsy, they should have easy enough access.
Tate is dealing with increased pain which leads to iv narcotics every 3 hours on top of her twice daily pain meds and her Intrathecal pain pump. These extra narcotics make her sleepy. Narcotic sleep isn’t restful nor sustainable, so we are needing the source of pain resolved asap.
This all could still go in so many different directions. The emotions that come with that are icky. Lack of sleep makes them ickier (and makes me unable to harbor a better vocabulary .) We are just praying for definitive results and a clear cut treatment plan. Thanks for walking with us as Tate’s Tribe!