So TRUE....

Don't think of organ donation as giving up part of yourself to keep a total stranger alive. It's really a total stranger giving up almost all of themselves to keep part of you alive. ~Author Unknown

Wednesday, August 18, 2010

Moms NOT Happy...

Devin's labs look great, the sores are gone, and the diarrhea seems to be gone too...  Hip Hip Hurray!!!

Spoke to the transplant coordinator today...

  • "So when can we restart Rapamune??"  let me remind you I have been told time and time again... how important this drug is... Maybe not for the now but surely for the long run!! this drug is key.... Her response.. 
  • "We are NOT going back on Rapamune"   
  • "WHAT!!!!! oh no I am NOT accepting that as an answer... that will NOT be the answer until I have a VERY IN DEPTH conversation with Dr. K.... He has had viral symptoms since July 25th now that the symptoms are gone I need to retry the drug again and have a very long talk with Dr. K before that decision is made.... 
  • "Well we usually don't do that"... 
  • "I am NOT the usual" ....  So before I accept that as the answer... my NOT so little --s!! will be in the car for a clinic visit with Dr. K.....  
Stay tuned waiting for my call back!!! and for those of you that know my husband... this even got a rise out of him...  "how is this decision made when a physician has yet to talk to us and inform us of a long term plan"
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