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It’s been more than three months since Bronson had his FIFTH open heart surgery to replace the Melody Valve with a tissue valve. October 2nd, 2015 is the exact day actually. He was discharged from the hospital just FIVE days later! I have learned that after every surgery, since the first one he had when he was three weeks old, that his body adapts and adjusts differently to each new palliation. Every surgery is a palliation, it helps to “ease (symptoms) without curing the underlying disease” and/or offers an outcome that will improve the quality of life. The most misunderstood concept of surgically repairing a Complex Congenital Heart Defect is that even with noted improvements after each repair, the heart is simply that, REPAIRED. It is NOT “fixed” and certainly NEVER cured. There is never a guarantee that any surgery will be the last. However, the chances for more repairs would’ve been less had we opted for the standard set of three surgeries to construct the right side of his heart to sustain his whole body.  And as most of you who’ve been following our journey from the beginning know, we instead, chose a path for pioneering in the name of science and innovation with the hopes that it would offer him a more “normal” quality of life. Only one hospital in the world was offering the OPTION to convert a half of a heart (that can sustain a good quality of life) to a whole heart. They’d only been doing it for about ten years. It was a choice we made after dedicated prayer, validation from “wise counsel”, and of course unwavering faith in the Lord’s plan. Although we knew it wouldn’t be easy, we had hoped it wouldn’t be as tumultuous as it was.

Our experience with innovation has been an extreme coaster with twists and turns that defied the stats. It jerked us from hopeless to hopeful and back and forth with only a few smooth rides. We left Boston on the path to Transplant that lead us to road trips to Stanford, in California, where we expected him to receive his new heart.  After his first Heart Catheter with the Heart Failure team at Stanford, we were directed back to Boston to assess his leaky valve.  That Heart Catheter there revealed that his left ventricle had done what they’ve never seen before or knew was possible. It had gone from being too stiff to relax to completely rehabiliatated.  Transplant was negated and the new plan was made to replace the Melody valve with a new tissue valve. In the interim before that replacement our “normal” felt more forlorn than hopeful. The spunky little boy that we handed over for his half of heart to be made whole, who loved to climb and even had enough reserve to be in the 75th% for weight (without a feeding tube), barely survived a four month post op recovery in the hospital. We brought him home almost in the 5th%, frail with protruding ribs, and with a feeding tube to sustain seven of the eight pounds he’d gained back before discharge. His energy level significantly decreased. His reserves were depleted which meant his resilience was limited, and that resulted in a miserably moody toddler. Vomiting became his standard to the point that we had “puke bowls” strategically placed throughout the house and one in the car readily accessible. Our once lower maintenance child with Complex CHD now required continuous oxygen at night to relax his heart enough to relieve the high pressure in his lungs so transplant would be less risky. Any congestion from an allergy or a virus would tank his oxygen levels leaving him completely dependent on full time oxygen for the duration of the congestion. THANK GOODNESS we have tanks at home or the hospital here in Phx would’ve became a second home. Through all of the despair and agonizing over this new baseline, we still somehow found joy in the one pound and little less than the inch he gained during that time. Sometimes he would even have short stents, of almost a week, without puking and those were the times we found reason to celebrate. Those were the moments that nourished hope. Hope that his heart would recover and that our normal “normal” would be restored.

We FINALLY feel like we have rose from the ashes of the Biventricular Repair that we were buried in this past year. When we were in the deep of it, we felt like we were enduring a life lesson about total dependence on the Lord’s will. Yet we still held tight to the truth that somewhere in the mess we’d have clarity that our choice to pursue a whole heart for Bronson was worth it. I think that first moment for me was when Dr. Lock’s PA came in after the heart catheter in Boston and said, “His ventricle is relaxing. His pumping pressures are  now closer to … “normal”. We’ve never seen this before because there is no known cure or therapy for a dysfunctional ventricle. We’ll take it though!” Then when he Beasted through his fith open heart surgery in true Bronson style, like we were accustomed to him doing before the Biventricular repair, the clarity then was even sharper! He had gained almost a pound before he was even discharged with his new valve. Those LB’s have continued to pack on since we’ve been home. In a little over three months he’s gained 5 more of them and has grown two inches. We don’t think he’s really stopped growing since surgery. He inhales food like he’s filling an extra limb just to contain it..

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. without giving it back… aka puking. He’s completely independent from the five meds that we were discharged with. Aspirin for anti coagulation is the only daily requirement he has. His craving for climbing is back in full force too! Almost every day he asks to go to his favorite playground so he can climb the “weally WEALLY SUPER DUPER HIGH ladder”. For the first time he even pulled himself up a high twisty slide. We take daily bike rides now. He runs, and jumps, and keeps up with the kids on the playground. The first month after his valve surgery he’d run and say “I can run faster now that I have a new valve”. Really the only complication we’re managing now is his damaged lungs from the scar tissue that has accumulated from the runs on bypass and intubation. Oh and a paralyzed vocal cord that he’s in therapy for. He is on an asthma regimen because he wheezes from what’s become a chronic cough when he has a virus and his oxygen levels drop. There has been a few short (less than 24 hours) runs of oxygen at home to support him.  We’ve adjusted just fine though, given all the progress.

Our “normal” before the abrupt thwart into this complex world of Congenital Heart Disease, two weeks after birth,  has been renewed to as close to our previous standard of life as it’s going to get. We are back to weekends booked with social galavanting  from one schindig to the next. The days of isolation for the next surgery are expected to have a 5-15 year span.  However, since every heart surgery is simply a palliation, we will always be vigilant about monitoring and, well, scrutinizing him for any possible signs of heart failure. Proactive action is the best defense we have to enable him to keep conquering CHD in BEAST MODE! This ride will never be “easy”. It is for now the most smooth it has been in the short four years we’ve been on it.

This post has been a month in the making! It’s been a challenge for me to muster the mental will power and the emotional recall of the deep that we’ve entrenched the past year. I discovered about myself during the four months we were inpatient that I deal best with this heart adversity when I stay grounded in the moment. When Bronson was dying after the bi vent,  I couldn’t look at the pictures or think of how he was before the surgery. It has taken me three months to accept that this new surreality just might be our reality. I’m beginning to fully embrace this journey that the Lord always intended us to be on. The quote “I never promised it would be easy, I just said it would be worth it”, resonates deep in my soul when I think about the only significant defect Bronson’s once half a heart now has, is an artificial tissue valve. It is starting to feel worth it.

THANK YOU, everyone from the Heart Center at Boston Children’s Hospital, for carrying out your role with so much compassion. The Lord sent us to the supreme pediatric cardiology team to fulfill HIS plan for Bronson’s heart. Both me and Eric are overwhelmed with gratitude for the relationships we’ve built with the dedicated people who have cared for us with unconditional grace. I’m always amazed when I see their commitment in action by sacrificing time spent with their families, to be at the hospital late, on weekends, and holidays to secure within their power the success of their patients recovery. They always seem joyful about it too. We even appreciate the participation from the Heart Failure team at Stanford. They too are a team with a genuine commitment to their kids. And lastly for Dr. Rhee, Bronson’s primary cardiologist here in Phx who has also been pivotal in this journey. We forever value his candor with his initial reaction about our plan to go whole heart. He was honest that he didn’t believe it would work, yet he committed to doing his part to get us through it. Obviously he’s convinced now! He remains consistent with providing quality care. We are immensely blessed with the ideal team for US!

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