Not what we were expecting

We met with the cardiologist this afternoon and got a lot of information.  I can't say it was good information but it wasn't horrible information either.  The surgery to switch Greyson's two main Arteries in his heart and close the defect is no longer a good option for him.  It looks like both of the valves have attachments to the opposite ventricles than they are supposed to which makes closing that hole and re-arranging the arteries not an easy option.  They are also not sure about the mitral valve which is currently a pulmonary valve but would become the aorta valve.  There is also some kind of obstruction before the blood flows into the pulmonary artery.  He has a whole list of problems, making his case pretty rare.  There are two repair options that can be done later in life when things are larger.  One they would close the septal defect so that the aorta and pulmonary artery are both in the left ventricle then insert a tube from the right ventricle to the pulmonary artery.  This would require multiple surgeries over his life to replace this tube some of which would be able to be done in a cath lab without stopping his heart altogether.  Option two is a Fontane surgery (I think that is what it is called) where they would attach one of the tubes bringing blood from the body to the heart straight to the pulmonary artery.  Then in another surgery they would attach the other tubes bringing blood from the body to the heart to the pulmonary artery as well.  In a way bypassing the heart all together for blood to be re-oxygenated.  This surgery would require less operations over his lifetime and would start about 3 months and be completed by the time he was 3 years old.  Regardless at this time we are looking at doing the balloon surgery to open the hole between the right and left atrium's of the heart so that un-oxygenated and oxygenated blood can better mix within his heart.  We aren't sure about the mitral valve and it has a chance of narrowing which without the balloon surgery would mean that blood would back up into his lungs.  It is a very hard pill to swallow knowing that our baby boy won't be able to be put back together correctly.  If he had only the septal defect or even the septal defect with the switched arteries they could probably fix his heart to be like a normal heart.  We will meet Dr. Fiore again tomorrow and be able to ask him questions then.  All the cardiologists and Dr. Fiore will meet on Monday to review all the cases that they have and they will discuss Greyson's case then and decide which is the best treatment for his situation.  With either case his chances of survival are about 90%.  Between the time we leave the hospital and he has his first surgery he will have to be monitored very closely to make sure that blood is mixing properly and being distributed where it needs to go which means regular visits to either Jefferson City or St. Louis.  Please pray for our little boy he has a long road ahead of him.