Offering another big, loud mouth to rattle cages if need be. Might I suggest going political with this and finding an advocacy group and a congressman or senator in your area to become your son's biggest fan?
I don't know much (see: any) about Pittsburgh's transplant ward/situations, but University of Pittsburgh Medical Center is HUGE. A million hospitals, so it seems. Have you contacted them at all?
Not sure what hospital to contact, but I would guess Children's UPMC or Presbyterian UPMC. going to ask my mom if she knows, she works for UPMC.
I think you need an advocate. It is too much for you to take in all the information people are throwing. Maybe Sarah - whom I am sure knows how to work these groups better than anyone - can put you in contact with a group that can give you a patient advocate, and the advocate can take it from there. I know everyone wants to help but I am not sure that criss-crossing the country is going to be effective. You need someone that knows where they will bend the rules and how to get the media to pay attention. I don't even know enough to know where you would get an advocate, but I do remember from going through this with my dad that you just need to get through the day and scouring every source for a transplant is too much. Don't feel like you have to do that. Do ask that the two or three people you most trust start reaching out to advocacy groups to find out whom at those groups will take this up.
I agree so much with this. My dad's wife's hospital PA did so much in the way of getting my dad admitted to a care facility so she could be released from the hospital. To start I found www.patientadvocate.org. They're highly rated on Charity Navigator www.charitynavigator.org/index.cfm?bay=search.summary&orgid=12466. I also found www.npaf.org. I didn't research either beyond my friend Google however.
I wish you and Forrest and the rest of the family all the best. You are all so strong to have gone through everything you have. My fingers are crossed that he is approved and treated soon.