OK I've had some sleep...

I posted on my message board I have belonged to since I was pregnant with Rylan about how Mindi's appointment went...and discovered one woman is good friends with a cardiologist she left me this message, she lives in Portland Oregon

I'll be thinking about you. I'm friends with a peds cardiologist and some peds cardiac case managers at Emanuel, so let me know if I can find out any info for you, though it sounds like you have it covered. I know they are great at the Hill too.
So it looks like if I or mindi would have any questions she might be able to help out on answers

and I also got this message from another woman there
LaDawn-
How did they measure the pressures, echo or right heart cath? An echo can misread by quite a bit so if she has not had a right heart cath, she should have one. Also, she really should see a cardiologist that specializes in PH. They are usually found at large university medical centers. I used to run the flolan program at the University of Michigan. A RH pressure of 58 is not a panic situation but should be monitored. There area a lot of meds that can help. If you have any questions, pls forward them to me. I can always ask of my colleagues since I am no longer working. What kind of heart surgery did she have as a baby? That can impact her treatment options (some may be better than others).
I will certainly keep her in my prayers. I can't imagine how you and she must feel. The good thing about PH is that it is no longer a death sentance, it can be treated successfully in a lot of people.

I didn't even think about getting cardiologist that specializes in PH didn't know there would even be ones like that, I thougt a cardiologist is a cardiologist, well the only difference being between pediatric and adult ones.... flovan is one type of medication they use for PH I don't know if that's the medication Mindi will be put on...... I feel like I've seen a light at the end of the tunnel.....How awesome have someone who knows about this stuff that can help walk us through making the best decisions .. I do feel as if a weight has been lifted off my shoulders its so hard to know the best thing to do in this kind of situation should she get a cardiac cath before she starts meds and I think she should.. I am pretty sure Mindi and I talked about it Didn't we ?? Its been kind of a blur the last two days, between not much sleep and reading up on PH ...anyways if we didn't talk about, we will..