Some Begging...

Heard from the transplant nurse practitioner today... still NOT who I wanted to speak to (nothing personal)..

• "The transplant team would like to try... cellcept!" 
• "Wait please I just need you to hear me... I am NOT trying to be difficult... I am NOT proclaiming to know everything.. I can only tell you that before you worked here they beat into my head the Rapamune is the drug... My son almost died in October... I was deathly afraid to re-start Rapamune I was assured without this drug the road ahead would be HARD.... I need to know how do kids on Cellcept do??  What is the prognosis??...  THIS SURELY CHANGES DEVIN'S PROGNOSIS IF WE CAN'T USE RAPAMUNE"
• "I understand your concerns... everything you were told is true!!... Cellcept does not work well... it most probably will change his prognosis... or should I say it will change things long term.... different kids do differently... it is not well absorbed and therefore with a transplanted bowel it's even harder.... but this is what they want... Start Cellcept and get labs in a week"
• PLEASE!! PLEASE!! just hear me.... we had viral symptoms since July 25th... can we please just try it... if his symptoms re-occur YOU are right and I will SHUT-UP!!!...  "is their any harm in re-trying it..???"
• "No the symptoms will just re-occur.."

After talking to the team they have agreed to give it a try... We will test his urine daily for protein, if the diarrhea starts again, and or the sores come back.. we will OFFICIALLY NOT be able to use Rapamune. At that point we will go on Cellcept, not the drug of choice!!  the only way we will know if we can stay on it is to do levels frequently...  To my understanding if Cellcept has to be used Devin's long term prognosis will change... :(  

If we get to the point of having to switch drugs then we will head to DC for a meeting with Dr. K..  We need to better understand the entire picture... For now PRAY!!!

Please understand this is a drug issue right now..  As of this moment  Devin is doing great &  living large!!!

ps... we are celebrating this years birthday in.... DISNEY!!