I addressed this with Dr. Botha & again today with the resident…

Something is not right.  Emerson took a 5 hour nap yesterday & this morning has been lying around with no energy & her eyes half closed.  She was awake only 90 minutes & has fallen asleep again.  Keep in mind this is a child who was jumping around her crib like a caged animal last week.  Either she is getting sick or we’ve been messing with her steroids &, in light of the discovery that she has Addison’s disease, we SHOULDN’T BE!!  The primary treatment for patients with this disorder is steroids.  In fact, Eme’s brother Bradley has the same disease & at her age was dosed steroids 3 times a day.  This week Dr. B reduced Eme’s steroids from 1 time a day to 1 time every other day.  It is NOT ENOUGH.  It is DANGEROUS.  I’m NOT OKAY with this!  The team wants to wait until I talk to the geneticist next week to see if every other day steroids are enough.  How about talking to the geneticist BEFORE making any changes?!?  It just doesn’t make any sense.  Dr. B is so concerned about her contracting another infection (steroids suppress the immune system); especially now that we know she’s colonized with a gram-negative ESBL.  I’m so concerned about her overall health now that we know she has Addison’s disease.  This is INSANE!