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We are home with another 10 day trip to Boston to log in the memory bank! We arrived in Boston on Thursday. Pre op testing was Friday. Heart Catheter and MRI was after the Memorial Day weekend on Tuesday. Wednesday we met for an hour and a half with the surgeon, Dr. Emani to review the data and determine the best surgical path for Bronson’s lil heart.  We went into that meeting with 3 real possible outcomes to choose from. We can stay single ventricle and move on with the third surgery to complete that circulation, the Fontan. With this option the left side that grew since his second surgery back in Nov, 2011 (when we started this journey to pursue a whole heart) would shrivel up and be negligent to his circulation. The second option is more like a hybrid of the Fontan and the whole heart. It would complete the single ventricle circulation while still utilizing a small percent of the left side ( similar to the way his heart is working now). Third, is the whole heart conversion from half a heart, the Bi Ventricular repair. This option is again the reason we even embarked on this path that led us to Boston. It’s also the most risky with the most unknowns for Bronson’s future quality of life. Yet it also presents the highest return on rewards than a half heart offers. It’s important to clarify though, that there are plenty of adults who are living an exceptional quality of life with a half a heart. They’re defying the odds and they’re succeeding at everything they were told they would be limited to, like running marathons, skiing, gymnastics, having a child, etc. Since Bronson was diagnosed, at 2 weeks after birth, we’ve been assured that he will be a premier candidate for the single ventricle circulation. Then we discovered the option to grow his left ventricle and his mitral valve with the hopes to someday convert him to a whole heart which promises a more “normal” quality of life.  It seems like an obvious opportunity, until the “unknowns” become known by seeing the outcomes of other kids who have had the same surgery.

In the beginning, it seemed so surreal that this possibility would even become our reality. Now 2 years later it is our reality. Yet within this 2 years I’ve seen a handful of kids go from an ideal post op recovery to left ventricular diastolic failure (the lv is stiff and doesn’t relax) a few months later. While it’s an invaluable asset to connect with other families who invite you to witness and share their personal journey’s, it has been crippling for me. It is so easy to project their outcomes onto Bronson’s future. With these personal accounts in mind I eventually came to the conclusion that I didn’t want to experience the risks and unknowns of a “new” surgery that promises but does NOT guarantee a more optimal quality of life. So Eric and I went into the meeting with the surgeon and the meeting with the cardiologist, convinced that we were going to opt out of the whole heart repair and stay with the “known” route, half of heart. But then the data from the heart catheter prevailed against our judgment. The pressures in Bronson’s heart have reduced from a range of 14-16 last year to now a range of 9-11. A normal heart has a range of 8-10. This lil nugget of data has shown that his heart is capable of strengthening with continued exercise. It also offers optimism to both the Boston team and to our cardiologist in AZ that with a full flow of blood it will successfully regulate his entire body. Also, Dr. Emani is expecting to salvage his mitral valve with some handy work and avoid a replacement valve. These nuggets, along with the cons of the other two options, left us with a lot of analysis. So much analysis that Dr. Emani recommended that we go home and return in 6-8 months for another heart catheter to reevaluate the data. With that option, we both left the meeting paralyzed, mentally and emotionally. So we prayed, we sought “wise council”, and we prayed some more. The next morning, Thursday the day of scheduled surgery, Wayne our cardiologist called to offer his insight. At the end of my conversation with Wayne, I finally felt an overwhelming sense of peace that the right decision is to convert Bronson’s sick lil heart from working as one ventricle to a heart with two ventricles and pray that with time it becomes more healthy. Instead of waiting for 6-8 months which would be Jan/Feb the peak of cold and flu season they were able to get us back on the schedule in 6 weeks July 18, which negates the need for another heart catheter and is in the peak of summer, an ideal season for heart surgery!  I now believe that the Lord wants me and Eric to whole heartedly 😉 embrace the journey before us with every ounce of faith we have in HIS will, completely trusting that he brought us to this junction with full intention that we continue this path to a whole heart. After all, we prayed and asked that you would pray, that HE would grow the left side of Bronson’s heart. HE did! I have committed to forgo my own understanding and insight and acknowledge that the Lord has made clear this path.

Below are some pics from our stay. **NOTE: You can enlarge the pics by clicking on each one and using the “back” key to return to the rest of the pics**