PH specialist from Boston

While shopping in walmart the other day, I received a phone call from the pulmonary hypertension specialist at Childrens Hospital Boston! I had emailed her at the beginning with our story, she emailed me back right away. We sent all Haleys medical records to her and so now I get the call. She said that they have seen some kids with similar stories to Haleys and one that was really close. This patient, she said there were differences but it was very similar, he recentally had his holes patched successfully and is now only on one PH med.She said there is still hope for Haley. Which I knew, We will always have hope. She was very nice and said that they want to be involved as much as we we allow. I am so excited! We do not have to go to boston for any tests or anything, we will send all info and records to them. We have a decision as far as if surgery is an option though, here or there. That will all depend on what happens in december. But she explained the answer to the chances of Haleys PH getting better or going away. I am hesitant to write it on here, I dont want to confuse anyone. I get it in my head but writing some of this is alot harder then just knowing it.
Ok I am going to try. Everyone is born with PH, the first few days of life when the heart and lungs are getting used to the oxygen coming in the pressures lower to normal (usually).
The pressures may go to normal and then later raise back up because of a heart defect, if this is the case typically if the heart can be repaired, the pressures will lower back down, not always back to normal though.
Now if the pressures never come down, you had PH at birth and it continued regardless of the defect. Sometimes the holes are actually needed, the holes are "relieving" the pressure. In this case, had the baby not had the holes, the baby would be a whole lot sicker. So sometimes with the PH and the heart defects being seperate issues ( meaning one did not cause the other) the sympotms are hidden when the kids are young. I dont know why.  Here the pressures may lower enough for surgery, but the PH will always be, although it may get a bit better, the other side is the pressures never lower and surgery is not an option.
We will not know for sure until we get there, not sure when or where there is.
This is just so complex and interesting. I dont have time to worry, I would be come insane to think about all the what if's and could be's. When this all started I came up with the explaination, I dont know if you'll understand it but here go's.
It is like a tree, the trunk are the VSD's. Then there are the big branches. Each branch divides into smaller branches which divide into even more branches. Each big branch is a could be that then forks off into a bunch of other could be's. We got on the branch of PH waiting to see what comes next.
I hope that makes sense, in my mind that sounds really good. Alright. Haley is doing well. I have been noticing with us hanging out with more kids her age, I do see her get tired faster then the rest, but it is normal for Haley. We just didnt have too much to compare her to before she started school.