Friday, May 31, 2019

Well now we know

 “Macsen has been declined for transplant.” 
All the results from the week of testing Mac had done in Boston mid May were  evaluated and discussed by the transplant team and his doctors. He is not a candidate for transplant. Those words are like a punch to my throat - they make me feel sick. He now has no plan B. 
Bc of his numerous surgeries with blood transfusions and grafts he has developed antibodies against 86% of the population. He has high human leukocyte antigens - bad if you are looking for an organ your body wont recognize as foreign and attack. Boston is wonderful and at the forefront of new techniques but they don’t have anything up there sleeves that will make him a better candidate at this time - it just hasn’t been discovered yet. 
So his pacemaker has to work - it just has to. At this time we have no other options for him :( 
I always shied away from committing to transplant as the next step for him and our family - we’ve known too many children who didn’t make it after transplant. But not having it as an option has been a big blow to me - Mackie doesn’t know what it means and his Daddy continues to have faith he will come out of heart failure with more time. I pray everyday that he is right. He’s been in heart failure for 2 years now.  https://drive.google.com/uc?export=view&id=1EVOYMrI98n3AeV8oLBYPRPRlliK4la7s

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