ASD

My 7 year old won was born with a 10 mm VSD a small PFO and had a PDA  the VSD needed to be repaired, while they were in there they ligated his PDA and stitched his PFO (that wasn't successful) any way finally the VSD finished closing around the patch and I guess the PFO is so small he used to have bi directional shunting through it...
the small things affect him for eg... he had a 29% subglottic stenosis and was stridor sounding all of the time worse when running or walking.. sick all of the time too they did a brohn on him and took off some scar ban. leaving him with a 19% narrowing the difference in his breathing is amazing and by medical perspective they shouldn't have even interfered but it was just a small thing that made a difference..
okay now he has this pfo very very tiny yet he is very exercise intolerance passed out once with a very low HR has a ILR and caught his HR as low as 38 and as high as 263BPM it says fast VT but with the complete RBBB it is hard to tell...he turns cyanotic a lot even on his forehead between his eye and around his mouth many many people have seen this..  i am terrified of loosing him and his cardiologist says it isn't his PFO doing this to him... something isn't right I don't have the means to go else where   what does a parent do this has been on going for 6 1/2 years now and it scares me that his HR was so low and it was 263beats and the doctor says no arrhythmia when compared to his base line...his HR never stays at one spot it is all over the place high low and in between,  he gets VERY VERY tired when it drops so low they have shown brady cardi... I really feel he needs a pacemaker  especially since he passed out once with a HR in the 40's and has come close other times... he did have a EP and a cath 3 years ago the EP was only looking at the upper right part...
what can i do... oh one more thing and I know this sounds crazy but many times in WARM water he turns blue
I am sorry to bother you. i hope you can give me some sort of advise, as i know you can't give a diagnoses over the internet but if you can guide me as to my fears and what should I do
Thanks
Michelle

[marialou]

hi  only just come across your post and i hope that everything is well and as it should be.with all my heart.as it has been so long since your post i cant comment as i dont know how things have progressed with your son as i know how frustrating it is whilst waiting for appointments and the not knowing,its so frustrating as a parent and i hope your a lot further to finding the answers your looking for.i truely know what your going through.keep strong and press hard. with best of wishes sincerely lisa