Bro...
I'm far from an expert but, my wife is. She's been a nurse for nearly 15 years and, ask Volatil, she's one of the smartest women I've ever met in my lifetime and very easily could be an excellent doctor. When Ashlee got sick, she dived head first into pediatric cardiology. If you ever have a question, please feel free to contact me (and guys, please don't spam me

)
andybyrnes79@gmail.com and I'll pass anything along you might want to know or even give you my number and have you speak with her. No question is too small, trust me. I asked A TON.
As an aside...
This beautiful little girl has had 2 open heart surgeries, 2 heart cath's, and 3 neuro surgeries associated with her heart condition (brain surgeries) and...she just had her annual neuro MRI yesterday and passed with flying colors. She's the picture of health.
I will be praying for you and your family. I know exactly what you're going through or, about to go through. I won't get too preachy here but...PRAYER HELPS, without my faith I wouldn't have made it. It was the hardest thing I've ever had to live through but, that little girl never gave up--kids are stronger than parents--she was a living testament to our faith. Stay strong and feel free to contact me. I'll help in any way I can.