The Research

Well, sadly until we decide how to manage Dax"s condition I have been absorbed in research and with the whole topic in general. Seems years ago you had two options. ASDs were either so large that they had to fixed or they were small enough that open heart at the time was too risky. With the advancements made with open heart procedures, other options and the known future effects of an ASD it is now suggested that all be fixed. The hard part is trying to figure out which way to fix him is best. Having to fix his ASD is something at this time I am still having trouble getting a grasp of. Even with the first hand knowledge of how it feels to have such a bad heart myself. I look at Dax and he is beautiful and healthy. He runs, plays and dances. He is carefree and the world is a beautiful place in his eyes. He has never seen how scary sometimes life can get. I just don't wanna take him from that right now. I don't wanna put him in a world of fear & pain. I know that sounds selfish and running from the issue. But, can't we just wait?? Just till Mommy can handle this?? Of course I am gonna do what is best but I want to be honest with you on my thoughts. I know he will be fine and that God along with the doctors will take care of him. But, this is really hard for me to allow them to step in this time.
Our progress so far has been great! I had Dax's echo faxed to me and it states he has a fenestrated ASD. Small hole in one area(labeled small asd) and in another area a PFO(hole that opens during baring down). He has no heart enlargement at this time but his tricuspid valve and pulmontic valve are strained. Basically, if his heart keeps getting strained such as in growth or sports there is a very high chance he will develop heart enlargement and valve issues as with myself. The theory is fix it now so that none of that will occur. I have spoken with 7 different doctors all with different views on how it should be fixed but all agree it should. I ask one yesterday...can't we wait 10 years just to see if there are better advancements out. His statement to me was, "Do you really want to take that risk with his heart?" "Do you want him to end up like you." But, I said, "that's not 100% he will and that he could be perfectly fine." His statement was, "look at the statistics, think of him not yourself. I know you wanna run away from this but simply you can't."
We have narrowed our choices down to A.I dupont(2 doctors there) and a couple at C.H.O.P. the 2nd in the world for pediatric heart surgery. In addition my own personal heart surgeon whom knows my condition best has referred me to two different Doctors at JHU. My surgeon's own son had open heart surgery performed by these two doctors. I honestly don't think I could get a better recommendation than from a heart surgeon who's been through the same thing! At this time we are waiting for an appointment with them first. If need be we will continue to get 3rd and 4th opinions never stopping till we feel comfortable.
I wanna thank all of my wonderful friends for helping us through this difficult decision. I have received so much feedback that was more helpful than you'll ever know! Please continue to pray that we make the right decisions for Dax and his heart:) I'll continue to keep you all posted!!