29 Apr On second thought
A call from the transplant team at 5:30am on a Sunday is never good. Evidently, the culture from yesterday grew back positive too. It’s quite confusing due to the nature of the specific organism that keeps growing out, but we are hoping that it is yet another contaminate. (Yes, we obviously have issues with inconsistent blood culture draws. Another issue for another time.) To be safe though, we were asked to take Keegan immediately downtown to be admitted and start treatment for a central line infection. Not exactly the lazy Sunday morning we were hoping for, and Keegan certainly did not appreciate being snatched out of bed at that hour.
The good news is that Keegan looks fine. He obviously does not have a bloodstream infection, even if his line is in trouble. Additionally, his blood counts have tanked per what looks on paper like an MAS flare, whereas if he had a bacterial infection, his white count should increase dramatically. We are talking about Keegan though, and he never plays by the rules. The line is a very serious issue though, especially considering the big gun drugs we were about to start. Today was a scheduled needle change for his port anyway, so we will draw another culture with a fresh, sterile needle this morning. We will have to treat him with IV antibiotics for 48 hours starting this morning until we are sure his line is clear. If it happens to be a true line infection, we will be doing a full 7-10 day course of antibiotics. More reasons to pray it’s not one.
I’m sure I don’t have to say it again, but this port is Keegan’s lifeline through which he receives sustaining IV nutrition 5 days per week and two drug infusions of anakinra per day. I know I end every darn post with this, but we would greatly appreciate your prayers for his safety and health, as well as clarity and guidance for his medical team. Thank you so much. We will update as we know more.