Tuesday, May 1, 2012

Silent scream

I managed to keep my cool today, but I have been silently screaming all day.

I'm mad.

Mad at many things both controllable and not.

The cultures all grew out our old friend from a few years ago, staph epi.  So far, yesterday's culture is still negative.  We will run IV antibiotics for 10 days from the first negative culture.  I promise to explain more when I can calm down.  Honestly, we are getting mixed information from transplant, infectious disease, and haven't seen rheumatology at all since we've been here.

The big question is whether or not we will have to pull his port and put a clean one in.  Usually, it's a three-strike rule, but with the bigger drugs we are discussing, the risk of sepsis from a looming bacteria may be too great.  These are all things we need to decide but can't get everyone together to talk about yet. Despite the fact that we are inpatient.

Mad.

Deep breath.


Thankfully, Keegan is very stable through it.  We managed to keep him from having a full MAS flare in response to the infection, and the last dose of pulse steroids are tomorrow.  What a huge blessing that the steroids were enough to calm without making the infection worse!

Not feeling too hot, but he managed to get down to the garden for a bit today.

I sure hope I have more information to share tomorrow, as well as the presence of mind and energy to share it.  We are beyond grateful for and humbled by every prayer for Keegan's safety and recovery.  Keep them coming....they work!  Thank you so much.

1 comment:

MisMisWilson said...

Praying for Keegan and family.