Wednesday, December 19, 2012


What did I say about jinxing it?  Will I ever learn?

Keegan and Audrey have strep throat.  Audrey actually spiked her temp first, although Keegan had been "simmering" all day.  We took her to the after-hours pediatrician last night to be tested for flu because in case you aren't yet aware, flu season is gearing up crazy fast.  This could be the worst flu epidemic since H1N1.  She didn't have the flu but tested positive for strep.  We started Audrey on antibiotics last night.

Keegan's temperature spiked around 7am.  Per the transplant team's instructions, we took him to the pediatrician to be tested for viral cultures, and he tested the same.  We started him on oral antibiotics this morning and came home.  No labs.  No blood cultures.  No communication from the team or pediatrician with the rheumatologist or immunologist.

If you have been following Keegan for any length of time, you may remember two things:
1.  Kids with central IV access are supposed to have blood cultures drawn immediately with any fever, few to very rare exceptions, and
2.  Keegan's MAS can be aggravated most quickly by viruses.  He can go from 0-to-60 faster than a Ferrari when it comes to full-blown flares.

Instead of following usual protocol or our previously agreed-upon procedures for dealing with Keegan's fevers, I ended up calling the rheumatology doctors myself to alert them of the situation.  They were not amused.  Nor are we.  Again.  Same story, different chapter.

However, we agreed to see if he still has a fever tomorrow morning after 24 hours on oral antibiotics.  If so, we will come in for full labs.  If not, we will draw MAS labs with his regularly scheduled labs on Friday.  We are hopeful that Keegan will not flare and that we can weather this at home.  While we had no desire to drag Keegan to the Children's ER during a flu pandemic (although I'm sure the pediatrician's office was a pure, infection-free bubble), the faster we address a brewing flare, the better the outcome usually is for him.  And the best outcome we can envision at this time is to treat him at home with antibiotics, increased steroids, and increased anakinra.

Moral of the story: we are home for now.  We are praying for a calm, rest-filled, healing night of sleep for our entire house so that we can take down the flag of black plague from above our house before Christmas.  Or at least stay within the confines of our house, and not the hospital, for Christmas.  We would be extremely grateful if you would join us in that prayer.  Thank you so very, very much.

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