Hello @fayette,

I'm sorry to learn about your son's struggles; as a parent, I can only imagine how helpless you must feel, and we are so glad you've joined us here on Connect – Welcome!

First, I would sincerely encourage you to consider that the doctors at Mayo Clinic collaborate as a multidisciplinary team to provide coordinated, comprehensive care. This collaborative approach means doctors can often evaluate you and develop a treatment plan within two or three days. Doctors collaborate as team members to ensure favorable outcomes.
If you wish, you can contact Mayo Clinic at one of our 3 campuses in AZ, FL or MN. Here is the contact information: http://mayocl.in/1mtmR63
Our experts can review your son's medical history and test results, and provide an evaluation prior to traveling.

Although the Fontan procedure is a life-saving surgery, there are negative consequences associated with this surgery including heart failure, liver disease, and renal dysfunction. Two published studies which you may wish to read:
– http://www.sciencedirect.com/science/article/pii/S1092912615300144
– http://www.onlinejacc.org/content/66/15/1700?_ga=2.145846388.177533910.1509840821-183701467.1503681034
The good news is that Mayo Clinic doctors are aware of these issues, and detecting these issues earlier with better imaging, better diagnostic tools that they've developed.

@fayette, given your son's symptoms and his conditions, he would derive the most benefit at Mayo Clinic’s Center for Congenital Heart Disease:
– https://www.mayoclinic.org/departments-centers/cardiovascular-medicine/overview/specialty-groups/center-congenital-heart-disease/overview
– Transposition of the great arteries care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/transposition-of-the-great-arteries/care-at-mayo-clinic/mac-20350598

You may also wish to view these conversations on Connect:
– Fontan Surgery and the Liver https://connect.mayoclinic.org/newsfeed-post/fontan-surgery-and-the-liver-2b450d/
– Congenital Heart Disease – What Patients Need to Know https://connect.mayoclinic.org/webinar/webinar-topic-challenges-in-adult-congenital-heart-disease-what-the-patient-needs/
– A Mother’s Perspective: Congenital Heart Disease https://connect.mayoclinic.org/newsfeed-post/a-mothers-perspective-congenital-heart-disease-2965a2/

And finally, I'd like to invite Connect's incredibly informative Mentors, @hopeful33250 @predictable @rosemarya @cynaburst and @johnbishop, for any insights and suggestions they might have.

@fayette, you must have so many questions, and the Connect community is here, listening; I hope the information above, gets the ball rolling. I wish you all success.