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1 comment:

  1. Hi. Howie from Norway It`s heartbraking to hear your story of Evanna, and still inspiring. I`ve looked for a long time for a family with a child having a similiar heart sickness as my boy Olai (8 months).
    Our journey is also a nightmare and is still uncertain, I guess as long as Olai lives.
    He also has MAPCA`s with pulmonary atresia, two collaterals going left lung, and one collateral to right lung. Starting with ccTGA, he got mitral atresia, so he only has one atrium (right one, on his left side), so he also has mixed blood. They did Rashkind surgery to secure the hole(kept it open) in the heart, from his disfunctional right atrium to his functionary left atrium. Hes has gotten several AV blocks, arrythmics, so now he has a pacemaker, puting his pulse on 90 :) Hes spO2 levels are 65-80 all the time. We are at home nursing him and giving all life quality we can. The doctors have no option for surgery at the time. This is because of the complexity of the MAPCA`s mainly, but also rest of the heart. We never give up though. He`s 8 months now, and going strong. May the MAPCA`s live strong for the rest of his life - though the odds are bad.
    Write back if you want :) Thanks for the inspiring blog.