Does anyone have a child with Primary Pulmonary Hypertension?

My 5 year old has been diagnosed with Primary Pulmonary Hypertension, he has two heart ops at 15 days and again at 15 months, but this is not related. He also has high functioning autism. He is currently on home oxygen and on diretics and bosentan... which we have to syringe into his mouth each day ..and... show more My 5 year old has been diagnosed with Primary Pulmonary Hypertension, he has two heart ops at 15 days and again at 15 months, but this is not related.

He also has high functioning autism.

He is currently on home oxygen and on diretics and bosentan... which we have to syringe into his mouth each day ..and often spits it out and he just doesn't understand the severity of what he has .

i am struggling with this and just want to chat with people in the same situation.

thanks in advance.

xxx
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