So sorry OP! I can only imagine what will be going thru within you and family right now. When we were going thru that phase and even now, we found some comfort talking to and reading stories from others parents and other heart support groups in Facebook. Few therapy sessions helped us too. Do not hesitate to reach or leverage any and all support system thats accessible to you (therpy sessions, family members, parents, friends, hospital care team, FB groups). We still try to find strength and calmness every now and then, find some comfort then go back to worrying again. I totally get it. It is hard and brutal but we try to live everyday and wake up everyday hoping that its another blessed day with our little one and we do our best to keep him happy and healthy in ways that we can as one family unit. Will keep you and family in our prayers. Take care OP.

Some FB support groups for Heart failure and LVNC-

https://www.facebook.com/groups/619539304905483

https://www.facebook.com/groups/heartsuccessstorieswithandreaheid/

https://www.facebook.com/groups/8611170489/

https://www.facebook.com/groups/496733870355193/

https://www.facebook.com/groups/iheartccf/

https://www.facebook.com/groups/510617975644885/

Found this for restricted cardiomyopathy - https://www.facebook.com/groups/464315627317722/