Meeting and The Plan

First of all, thank you for your consistant prayers for us and for some direction. We have a direction!
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We met with the doctor on Tuesday. Im reading through my notes and trying to figure out how to write it so it makes sense. Over the past couple of months while the doctor was trying to get everything together, a few things have changed. Like we thought if we could get the pressures low enough we could fix the holes, in cases similar to Haley, fixing the holes did not leave the person better off. The numbers we were working with, come to find out, do not matter as much as we thought. Haley is rare, so any research out there is not really solid. There is not enough to really count on anything and pretty much anything we do is an educated guess, based on Haleys body.
Ok so this last cath showed us that her lungs are working well, the blood coming from her lungs is fully saturated with oxygen. We know we cannot use her pulmonary and systemic pressures because with the two massive holes the pressures will always be the same. We go off her resistance, which is the amount her arteries are pushing back (resisting). We were looking at how low we could get her resistance during the cath. We tested with room air, O2 and then with O2 and NO (nitric oxide). There was always a change of some degree with each one. The numbers dont matter as much as we thought because anesthesia lowers all her pressures, and a cath is in almost perfect conditions. Ok so the GOOD NEWS is that there was change, no matter the numbers, when we added O2 and O2 with NO her pressures changed. We are counting on if her pressures were fixed, unchangeable, if we are too late, then no matter what we did her pressures would not have changed. But they did change so that is a positive sign.
This is all pretty much experimental. Like I said there is no solid info. So decisions we make are based on lots of prayer, faith and trust.
So we come to our options.
option 1: Fix her PDA, but do nothing with the holes and just treat her PH as normal PH. They are optimistic that this may improve quality of life, but there is no evidence of anything because theres just not alot of people like Haley, and the ones out there just havent been treated long enough.
option 2: Fix PDA and close both holes and Hang on, preserving the little bit of hope that her pressures will go down and her arteries will remodel. Zero evidence on this working or what the % of a positive outcome will be. Also this option puts Haley on heart and lung bypass for a really long time.
option 3: Fix PDA, close the top VSD, leave the bottom VSD open and create a small ASD (a hole in between the top 2 chambers) If this is a complete fail, we can reopen the top VSD and she will hopefully be as she is now, If it works and it causes her pulmonary pressures to lower then we will try the more aggressive med to see if we can get them lower in order to close that bottom hole at some point.
We are choosing option 3. It is the one that the doc, nick and myself all feel the best with. This the first time I have felt like we have a good option. Although it is surgery and because of the PH Haleys risks are much higher. Its scary, I do know God has given me peace with this option.

So to explain alittle more about option 3. We are creating the ASD and leaving the lower VSD as safety pop offs. The problem with closing all holes is that if the pressures get too high it will cause the right side of her heart to fail. So we leave holes. Her lower VSD is in the bottom of her heart where the heart gets alittle narrow. When your heart beats it pushes blood up, so with where the hole is the blood is not pushed directly through it. So we are hoping it will help her pressures become more normal, while still providing a safety escape when needed.
This process starts with a cardiac MRI. 3d image so the doctors can plan the surgery before they actually get in there. We will meet with the surgeon. Haleys cardiologist will meet with the cath docs to have a plan for the 2nd hole, even though we are not closing it now, it is for planning purposes. Then we will go for surgery. They will have her on a pretty heavy PH med during surgery and if all is well, will slowly wean her off before she leaves the hospital. Then we will see how it goes, reevaluate from there.
We are planning surgery early 2013.

The other night Haley asked about plan. I told her about the mri and planning to fix pda, she said " so we are actually doing surgery" kind of nervous, I said yes and at the same time we do that we are going to fix the top hole. Her eyes lit up, really we are gonna fix one hole. Woohoo we are gonna fix one hole! Im so excited! She had tears in her eyes, almost crying. I hugged her, trying not to cry, asking her your really excited. She just wanted her holes fixed. I explained lightly we will continue to pray for Gods will, it probably wont take her PH away but it will hopefully be a whole lot better then having two massive holes. We talked about nerves and fears, if she has questions, she needs to ask, worries fears we need to talk about them. We talked about surgery, she asked if her heart was going to stop, I said yes because they cant work on the inside while its pumping everywhere. She said so ill be dead, i made funny faces while pondering this, she thought it was hilarious. Then I had to answer,  no a machine is acting as your heart during surgery.We talked about cutting through chest, scars, death. These are things my six year old thinks about. I rarely bring things up, I wait for her to ask. We talked about when jesus calls someone home there is nothing we can do about it, he already knows how and when, the exact second, he is going to have you in his arms. But we are not going to focus on or worry about that. We have nothing to fear. She continued asking about surgery, shes really smart, so we need to have an appt with the doc so he can answer these questions that I cant. She asked if while she was sleeping during surgery if the docs could tell she has sweaty armpits. I said probably and they are probably talking about your smelly feet. I asked her if she thinks when people are sleeping during surgery if they ever fart, she thought that was the funniest thing ever! I know we are gross. :-) She laughed so hard. Awesome, we acted out what that would be like, she laughed, coughed, laughed, coughed threw up...... didn't make it to the bathroom for the first part......but to see her laugh like that...something I will never forget..... it was totally worth having to clean up regurgitated fajitas.

Haha so this is our life, as much as it may seem like a nightmare, its not, AT ALL. In this life we are growing, learning and loving more then we ever would if our lives were "normal."
This is the day the Lord has made, we will rejoice and be glad for today. One today at a time.