decisions decisions

Our doctors appt went as well as expected. We did an echo, still no change. So she hasn't gotten worse. Amen. I wish I could just tape our conversations with her doctor. It is so confusing, me trying to write everything he said.
One expert said we know the risks and the info that we have is enough to go ahead and attempt closing the holes. The other expert pointed out the numbers we have from the caths are under perfect conditions, Haley has 100% O2 and nitric oxide and she is resting. So in order for the pressures to stay that way the conditions have to stay the same. Ok so that doc said we should start a more aggressive med. This would attempt to lower her pressures to do what we have been trying all along. It is an inhaled med. with a nebulizer 6 to 9 times aday. Thats alot, especially with school. This med comes as a shot as well, we are looking into how many times that would be per day, and then it also comes in an IV, which would mean a pump and a central line. ( an iv placed in her chest.) The IV has some pretty bad side affects, not counting the fact she would have an iv in her chest at all times. We are not even close to considering that yet.

Ok so considering what the experts say, haleys doc says, whats best for Haley and mine and nicks input, we have decided to change nothing right now and do an extensive cath in sept. This cath will be about 45 min longer then normal, they are going to attempt to get every bit of information anyone could possibly want to know. Also the numbers that we have so far have been some how figured out using the measurements and an educated guess of how much oxygen is in her blood coming from the lungs. Usually this is pretty accurate, but we are going to actually get into that part of her heart and test it so we know for sure. So that means when they go in with the catheter thing they will actually punch a hole through the wall separating the top chambers to test the blood coming back oxygenated from her lungs. That I guess is the only way to get over there. The doctor said the hole should heal up on its own.
So if the results show change we will go through the process again of asking the experts and seeing how our doc and we feel about it, possibly leading to surgery. Sept will be 6 months from the last one, so hopefully something is happening. If there is still no change we will then talk about the new med. I am not sure how much she has to inhale, but when we used to have to do breathing treatments I think it took 15 min each time. We would do that 3 times a day.....I cant imagine 6-9 times at 15 min each and at school. Oh !! I almost forgot the best part, this new med is usually not covered by insurance!! Dr. did say that we will fight as much as we can to get them to cover it.
So we wait and pray and trust.
Haley is doing well. She starts 1st grade Thursday and is so excited! Ashley will be starting preschool soon too. She wants to be exactly like Haley. They are awesome!