Waiting for a very important page from Catherine for his thickener

Waiting for a very important page from Catherine for his thickener

We are home! Our flight landed in AZ at 10pm MST, 12 EST… our body time last Wednesday. Bronson loves it here. He is thriving since being back. His weight remains stable, along with his oxygen saturations, and his appetite has improved. When Dr. Blume first met with us, Bronson was “Failure to Thrive” and dying, essentially. He’d lost 8lbs, was in respiratory distress for the 7th time, and IV diuretic/ oxygen dependent.  His life was on a “tight rope”. Her goal was to progress him to a “two by four” and then finally to a platform. Her team indeed saved his life by restoring his nutrition via continuous calories through his newly placed feeding tube, calculating a reasonable fluid restriction, and successfully transitioning him from IV diuretics to oral which then led to weaning oxygen. From our perspective, he’s for sure on that “two by four”, figuratively and well, literally too. He has two ventricles and four chambers. 😉 He’s not quite a platform though. We were discharged from a four month hospital stay with about an 28oz fluid restriction in a 24 hour period with fierce diuretics and potassium supplements. Platform status would only be achieved with free flowing fluids and less diuretics. With time, that could be a reality for Bronson. We’re not counting on it though. Just simply hoping … and praying too. We continue to submit to the Lord’s will, just like we did when this “whole heart” option was presented to us. Currently, it could be the Lord’s will for Bronson to have a new heart entirely. The probability of transplant was apparent to me when I became connected with a group of moms/dad’s on Facebook who had already journeyed the Bi Ventricular repair with their child. I learned that the repair could fail even risking loosing transplant as an option. For those that remember (Bronson’s groupies 😀 ) I posted an update detailing our emotions from our risk/benefit analysis. Here’s that post for those that missed it and those that want the recap: http://bronsonbeckman.com/wp-admin/post.php?post=962&action=edit

During our time in the hospital when Bronson was sick I couldn’t look at pictures of him healthy. Now it’s a task to look at pics from when he was sick. There’s benefit in living in the moment. It helped me to be mentally impaired to the past, avoiding looking back. Currently, the moment that I’m in is gratitude. I am thankful (along with Eric) for the friendships we molded and the “family” we acquired from our “whole heart” adventure we began in Boston. The one that we are going to continue in Palo Alto/San Francisco CA at Lucille Packard Children’s Hospital aka “Stanford”. I had always known that if transplant became our reality that I’d want to ride that coaster close to home! Stanford is about a two hour flight from AZ and an 11-12 hour drive. For Bronson, the transplant process could be a three year venture. He had 8 blood transfusions after his bi ventricular repair. Multiple transfusions lead to high antibodies in his blood which means any heart he receives would be rejected by his body. An aggressive plan to neutralize those antibodies could involve a multitude of IV anti rejection therapies over a course of three years, along with intense monitoring for rejection via multiple heart catheters. We would be required to stay close to the hospital before and after surgery. A 2 hour flight versus a 6 hour flight to Boston or to even have the option to drive makes CA the most practical place to be. It’s also reassuring to know that the hospital has successfully recruited several of top talent from Boston! We’ve been referring to it as “Boston West”.  We agreed to complete the full evaluation with Dr. Blume’s team when the results from the last heart catheter revealed that we would be need to prepare for this new journey.  This four chamber heart is pumping with such high pressures that it’s creating potentially dangerous resistance against his lungs. That high resistance, along with his elevated anti bodies, had Dr. Blume concerned that other centers would deem Bronson too high risk and decline him for transplant.  We completed a full transplant evaluation so she could have data to send.  The team at Stanford already confirmed their confidence with transplanting him successfully. They still require their own data though which is why we need to complete their protocols for evaluation too. We have a tentative date for Dec 12 that will be confirmed today. Meanwhile though, he is on a prescribed .25 Liter of oxygen  at night to relieve that resistance temporarily while he sleeps. It essentially gives his heart and lungs a break. There is still a very dismal potential for this heart to succeed. We’ll know in three months after the first heart cath in Stanford to re measure the resistance from his lungs. If it is reduced then we MAY detour the transplant train and continue to monitor him closely with frequent catheter’s. Based on the first appointment with his AZ cardiologist yesterday, the hope that this heart is not “completely toast” does have some glimmer. His average heart rate has come down from about 125-135 when we left Boston to now it’s about 121-135. His red blood cells continue to reproduce at a rate high enough to compensate for the ones breaking through his valve and his O2 saturations increased to 94-98. Each of these are clinical markers of some improvement. Still, until his function is on a “platform” and providing a desired quality of life, one where he can drink leisurely (juice, water, and milk) preferably not alchohol … leisurely ;-),  we’re mentally and emotionally prepared for a new heart. I know I can’t express enough humility for everyone who has unselfishly and generously offered unconditional support financially, emotionally, and mentally. I honestly feel like “thank you” is too simple to encompass our appreciation. For now, it’s all we have though. We do have pictures to share!

 

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