September 20, 2024
It seems we couldn’t let September go without a visit to our home away from home. Tate is back inpatient for yet another blood infection. That’s 4 months in a row. After feeling worse than usual starting Sunday, her GI Dr. sent us in for cultures and labs on Wednesday. We pushed it a day, hoping things would turn around and got the call today that they were positive once again.
This is NOT common or expected or usual. It’s not due to poor management of her central line. We are waiting for confirmation on what type of bacteria she is growing in her blood this time, but they believe it’s the same as August. 2 out of the last 3 infections were translocated from within her own body. That third one we’ll never know and this one remains to be seen.
This goes back to Tate’s bone marrow results, which we haven’t publicly shared yet. It’s difficult to share information that is supposed to be happy but the alternative leaves you with no positive solution.
Due to Tate’s lousy counts, her team was very sure we were looking at a relapse or bone marrow issue. But in reality, her BM looks great from that perspective. What should’ve been cause for celebration really lands us in another arena of disease progression/process. The results led to an emotional conversation. Her body is destroying her front line bacteria and virus fighting cells despite all the immunosuppressants she is on, causing her to get sick from the bacteria that is in her own body. The solution would be more suppression to shut down her body further which makes her more susceptible to outside attackers. It’s hard to win in this situation. We have to weigh the cost vs. benefit.
Tomorrow we meet with the immunocompromised infectious disease team. The goal will be to track down where this bacteria is hiding out at. Tate is currently on three IV antibiotics that each run every 6 hours as well as her IV fluids and IV stress dose steroids every 6 hours to keep her blood pressure stable. It’ll be a busy night.