Today at 1:00 (it turned into 2:30...ugh) we had our first surgical consult regarding Melia's heart. The main doctor that would do her surgery had a complication in surgery and was not able to talk with us. So his first assist talked with me about her condition, consensus opinions and gave us recommendations. Here are the highlights of what he had to say:
~ National (if not International) Consensus is that her condition is best treated with a Full Repair. For her that means a Pulmonary Artery (PA) Banding to strengthen her future systemic pumping ventricle (the left) followed by a Double Switch Surgery. The Double Switch involves an Arterial Switch of the PA and Aorta and reattaching the coronary arteries and an Atrial Switch of Baffle.
~ The Arterial Switch has been done for about 30 years and the Atrial Switch a little longer. Therefore, there is no evidence to prove that this procedure prolongs life past the 5th or 6th decade which seems to be the time when most with CCTGA have significant heart failure (presuming they have made it that long in the first place). To put it simply, these surgeries have great short term outcomes, but the long term outcomes are theoretical at this point.
~They do know that the way the Right Ventricle pumps blood it often fails because it is exposed to high pressures if it remains the systemic pump. In other words, the long term outlook is more favorable theoretically with surgery than the known outcomes without surgery.
~She does have some stress on her heart with more blood flow going to the lungs than the body (1.4:1 ratio), a VSD that is contributing to this disproportionate ratio and a very mild Tricuspid Regurgitation. These are not problematic right now, but suggest that a PA Band would actually help these issues and prepare her heart for the bigger DS down the road.
~They predict a DS in 1-4 years.
~The PA Banding is a 2-3 hour surgery where they open up the chest and cut open the sternum to place a band with sutures around the Pulmonary Artery. She would spend a night in ICU and then 1-2 nights in a regular hospital bed and then home if there are no complications.
~They would recommend this first surgery in 3-6 months.
So, our next step is to meet with the actual surgeon, ask a few more questions and then get opinions from two other physicians out of Michigan and Boston. Once we have all that information we will make the decision as to whether or not we elect to have Melia have one or both surgeries in her future.
That is all the technical stuff, now for the real stuff. I felt pretty overwhelmed after this meeting. I had already lost my keys, I was late to pick the other kids up from school because the meeting was late, Melia missed her nap and was sad and mad, I had to call my sweet MIL for the zillionth time this week to help me out with the kids AND we brought all this on ourselves! We chose this path. We also chose to sell our house and buy a new one during all this. So, I cried.
And, in those few tears God spoke in His still small voice. He reminded me what He has taught me before. Joy is NOT dependent on circumstance. A few months ago I was feeling too settled and that made me uncomfortable. Now, we are changing everything in our lives and I am uncomfortable. When life is an emergency or I am frantic to figure out the future (as if I have any control over it at all) I lose joy. But, when I GIVE THANKS for the here and now and am present in the moment I find joy!
So, fortunately, the tears shifted when I stopped to thank God for the little one sleeping in her car seat, the rain that brought out green grass in May, car keys that were found, a call with two house showings tomorrow...how quickly giving thanks can turn sad into glad.
As we gather information, if you think about it, would you mind praying for us. Pray that we would have Holy Spirit wisdom to make the best choices for Melia. Pray that she would not lose her joy through all of this medical stuff. Pray that her brothers and sisters would be blessed through it all too.
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