Doc. Oct 18

Some say no news is good news......Im starting to doubt that. Echo looked the same. Doc said that was expected. Problem with echos is they are crappy indicators. So they will give little info about pressures, but will show major ones we need to move on. So far everything looks the same. We have another appt. November 22nd. Haley will miss school, which we both dont like but this doc only really does office visits for special people. :-) Its easier to just stick with his schedule. November we will do echo and chat. We are all planning to possibly do a recath. mid december. That will show exact pressures and a better look at whats happening.
Doc said her heart looks good and strong though. I found a group online for parents with PH kids. I have been talking with them, what a huge help. Their are some amazing stories out there, the things families go through on a daily basis is incredible. But from the stories I have heard they have so much hope and find the blessings within the chaos. Any way most of them were talking about the pulmonary pressure, some 35 some 110. In a typical heart one side is the blood pressure you take on your arm, I think that is usually 80. The other side is the pulmonary pressure typically 20. So anything over 25 in considered pulmonary hypertension. I asked him about this, I had never heard this number. He told us thats the hard part about his job in this case, for Haley because of the massive holes the pressures right now are the same. This is ok for now though because her red blood is still mostly going over to the blue side. The problem comes when pulmonary pressures get higher then body and blue blood gets pushed over to the red side. I hope this makes sense, any one know how I get diagrams on here? :-)
We also talked about the differences between PH and PH Haley. He said as far as quality and quanity of life its about the same. Her risk of stroke is higher then usual but not high enough to worry about it, he said as she gets older her risk will increase but if all stays as is she wont be here long enough to have stroke be a worry. That was hard to hear.
Thats what I have so far.