Friday, April 27, 2012

Fever, fever go away

Well, let's see.  The last flare started April 13, so Keegan had a break of just 2 weeks this time.  Seems he went from a flare every two months, to a one month break, to a two-week break.  Moral of the story?  This disease process is getting ahead of  

He has been "simmering" all day between normal and 101.  The team agreed to draw labs outpatient and start another 5-day burst of oral steroids at home.  We will take him in to the ER tomorrow morning for another round of labs to see how this is progressing.  If his pattern of the last year holds, tonight is going to be the hardest.  We are armed with zofran and IV tylenol if needed.  The plan is to ride this one out at home as long as his labs or clinical symptoms don't take a turn for the worse.  

Obviously, this speeds up our timeframe for increasing Keegan's drug regimen.  We were hoping to have a team meeting with his doctors this week to go over everything.  (Our transplant coordinator has been working hard on this meeting, but it is pretty difficult to coordinate some of the doctors' schedules.)  We will likely not be able to wait until the remaining genetics come back to make this decision as we would have liked.  Hopefully, we will know more on Monday. 

For now, we once again humbly ask for prayers for our Bug and for our family.  Our hopes continue to be dashed with each escalation of this disease.  Whatever it is.  We know the coming decisions are big and risky, and we are just tired.  Tired of never having an easy option and never having a break to enjoy a little normalcy.  At the risk of sounding like a whiny child (Lord knows I don't need a third one around here), it's not fair.  We lived through this all last year, watching it get worse with each passing week.  Even though we have more information now and an inkling of what's going on, it's still happening all over again.  And we're tired of it.  Exhausted, actually.  I can only imagine what Keegan feels.  So, we would greatly appreciate your prayers for all of us, and we will update again soon with more information as we know it.  Thank you so much.

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