I'm sorry for the delay in updates. I needed to take a short break from posting, but I'm hoping to get back into it soon.
Not tonight though because we have to be downtown at the hospital with Keegan at 7am tomorrow to be admitted for a heart catheterization and biopsy. The whole work-up. He was supposed to have had this done about a month ago, but his relapse delayed it. We are hoping that Keegan will get to come home tomorrow when all is said and done. However, he has been through a lot recently and thrown us a lot of curveballs. It wouldn't surprise anyone if he needs a night inpatient to recover from this.
We had a nice, quiet Thanksgiving and are back into the craziness that is Keegan's appointment schedule. Keegan has been pretty stable. His labs look better. He is back down to one dose of anakinra and even restarted the steroid wean on Tuesday. Unfortunately, we had to double his steroid dose today through Friday. With chronic steroid use at such a high dose, your body stops producing "stress hormones" in response to an injury like a surgery or heart catheterization. So, we have to do it for him artificially, as well as with a pulse dose while he is under anesthesia tomorrow. The good news is that if everything looks ok, we should be able to go back to the current dose by Saturday. It just makes for an even more miserable Keegan in between.
We have also been contacted by the HLH specialists in Cincinnati. We have completed all their paperwork, and once they have his medical records, they want to see both Keegan and Audrey. Keegan to review his history and complete a consultation with us. And Audrey to see if she is a possible bone marrow match for him. This does not mean they think it is necessary for him. We don't know that yet, but it is prudent to go ahead and see if our best chance for a match, Audrey, is possible. That being said, there is a LOT of paperwork for them to go through. We don't know when we will be going up there. Hopefully not until after the holidays, but if they said, "be here December 23rd", we would.
I'll wrap up this post the way I started...with an apology. I'm sorry for how unorganized and scant this update is. I will get back into the groove soon. I hope. Until then, we appreciate your support and prayers for Keegan's stability and health, as well as for wisdom and clarity for his team of doctors. Thank you so much.