FINALLY...

We FINALLY heard back from Denver Children's today, Dr. Ivy is supposed to be the top, or one of the top, pulmonary hypertension docs in the US. We got to speak with his nurse who took the time to explain what they have planned for Mattea(!) and to answer all of my questions. After they looked at all of her results of her cath and echos they are going to have our cardiologist start her on Viagra (approved for use in pulmonary hypertension to vasodilate), and will possibly add in a second med (Bosentan) later. They are going to start her on a medium dose and take it up to a high dose to try to lower her pulmonary hypertension. After a period of time, at least several weeks to a few months, we will take her up to Denver and they will do another heart cath to see what effect the med has. During that cath they will test to see how her body will respond if they close any or all of the holes in her heart.
She went on to explain that in some cases when surgery is not the best option, the patient can be medically managed and live into their FIFTIES! (Our cardiologist had told us she would only live another 5 or 10 years) I asked about whether or not they could do a partial repair to see how she would tolerate it. She said that was one thing they would check for in the cath. She said that sometimes they do leave small holes because the patient tolerates it better that way. I asked about heart-lung transplants. She said a lung transplant is the only "cure" for pulmonary hypertension but it only has a 50% chance of a 5 year survival rate so it is reserved for a very last resort, as the patient couild live much longer being medically managed.
So...our goal now is to reduce her pulmonary hypertension as much as possible and hope there has not been too much permanent damage done to her lungs. But even without the surgery, things are sounding a lot better. Now I need to work on the ENT doc to get those tonsils out, which will also lower her PH.
Thanks everyone for your support and prayers! Looks like sooner or later, one way or another, we are going to Denver!