Saturday, February 4, 2017

Day 4 - Seth Elliot

Adoption is something that has been on my heart for many years. I didn’t know what it might actually look like for us, but I knew there was something there that I wanted to be a part of. After I gave birth to my fourth child, I felt quite confident that I was done pushing out babies, and was ready to start looking into adoption. On my 30th birthday, I celebrated by filling out our application to begin an adoption from China. When we filled out our MCC, I was still quite naive to the entire process. As a nurse, I wasn’t too worried about most things and we checked a lot of boxes. About four months after submitting our application, we got a call from our agency about a sweet 11 month old boy with complex CHD.  Even though I am a nurse, hearts were never my “thing”. I looked over his file and the hospital discharge reports and really had no idea what I was looking at. We knew from the beginning that he was ours, but we did our due-diligence and tried to get a handle on his complex heart. Six months later we boarded that long flight to go get our guy.

Seth has a double inlet single ventricle heart with transposition of the great arteries and pulmonary valve atresia. He was in an orphanage sponsored by International China Concern - and so at 6 months, he was taken to Shanghai where he had the Glenn performed on his tiny heart. It was exactly what he needed at exactly the right time! We are so thankful for this! When we arrived home in June of 2015 and saw the cardiologist, he was very pleased with his repair and gave us the green light to wait about a year for his next open heart surgery - the Fontan, to palliate and lessen the workload on his single ventricle. We live at almost 8,000 feet in Colorado, so we were warned ahead of time that the altitude might present a problem and further compromise his already-compromised heart. I am happy to report that while he certainly stats higher at sea level, it doesn’t seem to affect his energy or capacity to be active.

In June of this summer, almost reaching the desired 30 lbs, Seth went back into the OR for his second stage operation, the Fontan. They performed an extracardiac Fontan, adding a Gore-Tex conduit on the outside of his heart to passively pump the blood to his lungs, using the diaphragmatic action with breathing to ‘pump’ the blood. This leaves his one ventricle to pump the remainder of the blood to the rest of the body, which is clearly the bigger job. They also left a fenestration, a small hole, in the conduit as a ‘pop off’ valve. At our higher elevation, they have found it helps regulate the pressures in the heart better. We were told to expect 10-14 days in the hospital… Seth rocked recovery and we were out in 7! He spent about a month on supplemental oxygen to aide in recovery of his heart and lungs, and then that was gone too. 8 months later and he’s an active, curious, wee bit ornery three year old with some brave  scars on his chest. His cardiologist is extremely pleased with his health, stats in the high 80’s (the fenestration keeps his stats lower as there is still mixing of oxygenated and unoxygenated blood), and we don’t even have to go back for 6 whole months!

At this point, there is no further surgery or palliation that can be done for his heart.  There are a lot of unknowns with these single ventricle kids - not much in the way of research or longevity historically in people with single ventricles.  A lot has changed, and is changing, in the way these hearts are cared for -- we hope to be proactive and mindful of his liver and kidneys as they, in particular, bear the brunt of the altered circulation the Fontan provides. Lessening the workload on his one ventricle is most important, but it’s not without consequence.

Whatever the future brings, we are so thankful a scary sounding heart didn’t stop us. Our heart journey has been relatively easy thus far, and I am well aware that isn’t always the case. We are thankful for a healthy boy who is rockin life with style - you would certainly never know what lies beneath those brave scars! We would do it again in a heartbeat… and hopefully someday soon.


Andrea Olson said...

Thank you for sharing Seth's story!

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