Okay so, we had the 5 day VEEG (turned into 4 days). And it did confirm what we thought it was. The oxygen does NOT get to Eli's brain when and after he has done any normal amount of activity. It is because of his Subclavian Steal Syndrome. This is VERY rare. I actually don't know any other children with this. She even said (as we have too) "this is an old person thing". She does NOT know what is next because the cause in old people is somewhat different. Eli's was related to his original heart surgery although it did not begin actually until his stroke during his 2009 heart surgery, if that makes sense. In old people it is because the vessel they used to correct his orginal heart problem get clogged. In Eli that vessel no longer exists so they can't just go unclog it so to speak. She is having to talk to some adult drs and his cardio because this isn't her realm of expertise. But she did make it sound like he might have to have some sort of surgery. I'm NOT going to count my chickens before they hatch. I'm honestly just glad this dr took the time to truly evaluate and confirm a positive diagnosis and is starting somewhere at least of what direction we should go. She also explained his stroke (which I already knew but didn't fully understand some things). She explained his extremely high risk for stroke and additional brain damage. She also talked about the neurological issues he has and that they are directly related to his heart surgeries. I'm so glad I went to this dr. And even if it doesn't get corrected now, I'm glad I can at least have answers and plan out activities better so that Eli can participate without hurting himself.
Thank you ladies for the support. You all are so wonderful.