Dec 8, 2023
1 Year +285
Tate’s look about sums up the day. She hasn’t looked good and really hasn’t felt well today. And this is where the emotion comes in.
We spent a lot of time with Infectious Disease today combing through symptoms and changes in the last couple weeks and even months. Tates blood cultures are negative, but she’s sick. Fevers have been gone for 24 hours but that’s all that’s improved. Her baseline is so poor that it’s not like she went from going to school and hanging with friends to suddenly fighting nausea, fatigue and pain. She went from lying on the couch during the day with nausea to more nausea. Fatigue to more fatigue and pain to more pain. It’s only the fever that brought her in. That makes using symptoms to guide labs and tests that are beyond the obvious choices, a challenge.
The plan….lots more labs sent out. Viral and now fungal cultures. These will take some time to come back. We stopped the antibiotics and around the clock Tylenol to see if a fever pops through again. That leaves us on a wait and watch. Everything else that is done here, I’m set up to do at home….IV fluids, GJ meds and feeds, pain management, etc. If Tate remains fever free and all the labs are pending, we technically could go home and replicate the hospital there like we do every day. Because the reality is that Tates baseline is always Hospital ready. I could bring her any day of the week and they’d admit her fever or not. We just work really hard to keep her home. If nothing ends up showing in these latest tests, the fear for us is that perhaps what we’re left with is not knowing the fever source but more importantly, further worsening of her baseline. This is Tate’s reality, but not easy to accept.
We don’t want to be here. Yet I also don’t want to take her home to watch her struggling more or deteriorate further if there’s anything more we can be doing. I am asked to make the call. The responsibility and subsequent emotional fatigue threatens to consume. I’m supported by her team either way, but it’s truly impossible for them to fully understand the weight of either choice.