26 Mar Better news
I have held this in all day, not even telling our family, because I didn’t want to jinx it. Until we made it well past the 24-hour mark, I wasn’t sure I believed it.
The line culture that grew out was contaminated!! Keegan does NOT have a line infection!! Praise the LORD!! (Dearest family, please don’t be mad at me. I’m sorry – just didn’t want to say something until we knew for sure!)
Ok, whew! Have that out of my system now. Unless you are the mom of a kid with a line, a nurse, or a doctor, I don’t think you understand what an enormous relief this is! Now, we will still run the antibiotics for 48 hours after the culture was drawn, just to be sure, but oh my, such a relief.
Unfortunately, that doesn’t mean Keegan isn’t having a MAS flare or that he doesn’t need the pulse steroids. This means that the flare is either being caused by another virus or simply by his underlying immune dysfunction being too powerful for the amount of drugs he was on. Personally, I think it’s the latter, but I have no way to prove it other than that the last two flares have happened when we reduced his steroid load to 6mg/day. Neither option is good or better than the other. Both mean we need to get more aggressive in treating this. He is going to be exposed to viruses his whole life, and he needs to be able to fight them. But if he is flaring with no known trigger, just because his immune system is attacking itself so fiercely, then that means we need to be more aggressive in treating something that we don’t understand still.
Today’s labs were fairly stable with a little improvement here and there and a little worsening here and there. His ferritin went up more to 2500, but that’s a minor change in the grand scheme of things. Tomorrow will thankfully be the last dose of mega-steroids. Keegan is absolutely beyond miserable. Nothing makes him happy, and many things cause him to fly off the handle. He’s exhausted and hungry but too nauseous to eat. We don’t know if he is a little zoned out because of the drugs, because he’s not feeling well, or because of something more sinister. Hopefully just the first two.
If all goes well, we could be discharged by mid-week, which would be wonderful. All of Keegan’s doctors will be back on service tomorrow, and the discussion will begin about what steps need to be taken for his long-term health and management. Everyone now agrees that this disease process is too out of control to take lightly, but we’re not sure what will change from here on out just yet. We did send off the research labs yesterday to see if we can learn anything from Keegan’s genetic sequence that would clue us in to where this inflammation is stemming from. That could take weeks though, so we will have to take action before then to stay ahead of the game.
Thank you so much for your prayers for our Bug today. They were certainly heard!!
