UPDATE: Sonia is all closed up and they are cleaning things up.  She’s OK and we’ll be in there soon.

After Shannon’s long post the other night, I felt I had to write something in response.  As you can see from her last post, Shannon has settled down a bit after we talked a lot of this over with one another and the doctors.  There are a few things I need to set straight for everyone else though.

I am in 100% agreement with her on the emotional challenges and disappointments we have faced and will continue to face.  However, I do not agree with her assessment of our doctors or her original view of Sonia’s condition.  While Shannon speaks with a great deal of emotion, I prefer to stick with the facts and logic.  Perhaps it’s the Marine in me, the engineer in me, or my Y chromosome.  I might even have some Vulcan blood in me. 

Little BundleFirst and foremost, I feel that the care Sonia has received here has been the absolute best.  Period.  The general skill level of the doctors here goes without saying.  In addition, the staff has taken a personal interest in Sonia.  Everyone in the cardiac unit at CHOP is intimately familiar with her condition.  When Sonia went back on ECMO and word spread that the surgery did not go well, we received a visit from nearly every staff member in the unit, from surgeons to nurses.  Our cardiologist was at home when Sonia was in surgery (another staff cardiologist was on duty), and she drove in that night as soon as she heard about how things were going just to speak with and comfort us.  When Dr. Spray, her surgeon, took her off ECMO he sat in the room and just watched her for over an hour to see how she was going to do.  He wasn’t going to leave her side until he knew she would make it.  Mind you, this is Mr. Superman Surgeon who has surgeries lined up one after another all day long.

I don’t take it lightly to entrust my child’s life in someone else’s hands.  We had to do it on faith at first, but ever since we arrived at CHOP the doctors and staff have earned my full trust.  I examine every medical decision carefully, but I put a tremendous amount of trust in the doctors’ advice.

The second topic is regarding the decision to go ahead with the transplant.  It’s hard to keep handing over a seemingly healthy baby and get one back that appears to be barely hanging on to life.  We have done this from the very beginning.  Sonia was a gorgeous, bouncing baby girl right after birth.  She looked as healthy as can be, but the reality was very different.  Without surgery (including the following complications) she would have died in a matter of days.  Sonia looked great the past couple months.  She was happy, growing well, and active.  The reality was that she was still very sick.  She has a giant leak in her tricuspid valve.  All the doctors were amazed that she had done so well.  Her body did an incredible job adapting to the leak but, physically, this could not go on forever.  As she grew, her anatomy could not support it.  If we had done nothing and she continued to grow her heart would begin to fail.  That’s the normal progression and it’s exactly why there are 3 stages for this condition.

The problem was that Sonia’s heart was fooling us all along.  Her leak is actually what kept her alive this long.  The second surgery exposed that her heart really can’t work against normal pressures.  This is something completely new.  Transplantation was always a distant option, but now it is clear that her heart will not serve her well at all.  Every doctor here feels that transplantation is the best option now and I can’t see a real reason to disagree.  The very best outcome with her current heart is worse than nearly every option with a new heart. We had hoped it would never come to this, but it is reality.  It is what Sonia needs.  It is what we must do, and there isn’t an ounce of doubt in my entire being.

Taking a heart out of one child and putting it in another is a big concept to get your head around.  It seems odd and perhaps unnatural.  I don’t deny that.  The reality is that the surgery itself is remarkably simple in comparison to what these surgeons (especially Dr. Spray) normally deal with.  Once transplant doc told us that a heart transplant is like sewing a pair of pants for them.  The real emotional challenge is waiting for the heart and the real technical challenge is the post-op treatment.

We often tell ourselves and others that we would give up everything for our kids.  This is our test to put our money where our mouth is.  God-willing we will find a heart for Sonia and she can truly begin her road to recovery.  Our career plans, where we live, what we do will all be changed based on what Sonia needs.  It seems daunting at first, but as I consider it further it’s not bad at all.  What else do you make these decisions based on?  Where can I make more money, what will give me more prestige, what is most fun, where is there a good real-estate investment?  Does any of that really matter?  If all of our children live happy, healthy, fulfilling lives then I have accomplished everything I need to in life.  I’d like to think I have always put my family first, but I realize the importance of that now more than ever.