My daughter was operated on for a CHD shortly after birth, and had a complicated hospital stay: on the brink a couple times.
In the process of hospital stay her digestion was definitely trashed; she was put on tpn, and octreotide- and then then a crappy nestle brand formula.
I've worked hard to recover her gut.
But aside from that she has scars on her pulmonary vascular system in multiple places where they Frankensteined her heart.
They have put a timeline on her next surgery based on the state of her right ventricle. She had a pulmonary conduit and some mapcas moved. I've done research and the number one reason for reoperation is failure, calcification, or dysfunction of the conduit- or heart failure. I'm also concerned that one of her lungs is not doing well and nobody I've brought it up to has offered a valid response.
I've been giving her hawthorn- instead of propranolol
We are passed a date that was given-for a scheduled reoperation and she's been doing great since then she learned to walk and she's been thriving... although recently her exercise tolerance has gone down.
You could probably tell what my concerns should be better; but as far as I know right now I'm seeking things to reduce or reverse calcification and inflammation- reduce load on heart(heart failure), open pulmonary vascular system, and keep a healthy rhythm.