30 Jan We’re back…in more ways than one
Yes, we are back home from Cincinnati. Arrived safe and sound on Friday afternoon.
Unfortunately, we are also back in the hospital here in Dallas. Keegan was admitted to Children’s downtown today after he started spiking fevers again. He doesn’t show any signs of having a virus, and his labs drawn today don’t look like a central line infection. Still, we have to draw cultures and run IV antibiotics for 2 days minimum while they brew to rule out a line infection for sure.
I apologize for not updating about our trip sooner. Due to space considerations on the tiny puddle jumper of a plane we took, I decided to unplug for a bit and leave my computer at home. I am editing a few pictures and hope to get a more detailed post up about how it went and what we learned some time tomorrow.
Until then, I will answer the burning questions I know everyone is dying to ask. First, we are proceeding with typing to see if Audrey is a bone marrow match for Keegan and if there is anyone currently in the national registry that is a match. We want to have that information ready to go if needed, and we should know what the results are by the end of this week or beginning of the next. However, we won’t be proceeding to transplant right away… if ever.
There are a lot of reasons why and what we are still waiting on, which I will try to explain in a more comprehensive post tomorrow. Without an identified genetic mutation for HLH though, the team said they would want to see him flare again before making decisions about transplant. Well, ask, and you shall receive. Keegan’s ferritin level spiked to 869 today from the 100s end of last week. We don’t have a plan from our team here yet, since it’s the weekend, and none of them are around. You better believe we have already contacted the team in Cinci for guidance on the proper steps if this does indeed turn out to be a flare. We will need a few more days to pan that one out unless something extremely glaring pops up. I told Keegan that I was pretty darn sure that when the doctors said they wanted to see him relapse before taking the next steps, they didn’t mean the day after we got home!
For now, Keegan is pretty lethargic and easily agitated, but he is stable and on the cardiac floor for now. He responded somewhat to oral tylenol today, so we haven’t had to bring out the big guns for fever just yet. I was asked tonight if I had a gut instinct whether this was Keegan relapsing or something else. I’m not really sure. It’s hard to argue with some of the numbers, but this is just a little different than before. We know the drugs he is on will mask some of the old symptoms, which just makes it even harder. But he doesn’t have any obvious symptoms of an infection, so that seems to support a relapse too. Only time will tell now.
We do appreciate your prayers for Keegan at this time. We were hoping to not have to takle any of this just yet. Keegan’s never been great at letting us have time to prepare though. Not sure I would have expected any different from him now. Thank you again, and we’ll update soon.