Monday, November 7, 2011

Back home

Keegan was discharged home yesterday afternoon.  His fever did not return, and he woke in a decent mood.  His labs stayed about the same, although his platelets continued to fall.  It isn't reasonable to sit around inpatient waiting on labs to get better.  As a friend once said, Keegan would drive himself home from the hospital if we waited on labs to be perfect.

Today we learned his ferritin level drawn Friday had jumped significantly.  Basically to the level that it was when the doctors in Boston started to get nervous.  We will follow-up with rheumatology tomorrow to see what happens from here.  We did also learn today that the genetic testing run so far is all negative for an inherited version of HLH.  That doesn't mean he doesn't have it.  It just means either (1) the defect is on a gene we haven't identified yet or (2) he acquired it somehow from a trigger, such as a virus or his medications/illnesses in infancy.  Don't quote me on that last part, as we have yet to discuss this fully with hematology.  Now that the labwork is close to being finished, we will likely start seeking out second opinions from HLH specialists, particularly in Cincinnati and Houston.

I simply cannot express our gratitude for the prayers and support offered this weekend for Keegan.  This was a very stressful time, and we are so grateful that Keegan handled it so well.  More soon.  Thanks again!

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