This morning Cannon asked me "why Ethan was never naughty?"... "Well son, he never got a chance to be. . . but if he had been allowed more time, I am sure you would have taught him all the tricks in the book!" ( Gotta love how purple he turned when he cried )
Last night the cardiac team at St. Joe's had their big M and M (medical review of Ethan's whole course). I have been anxiously awaiting this. I was well aware it would hurt to hear. But I had questions I wanted answered. I have had anxiety about this meeting and hope that I can work more towards closure once its over. We will sit down next week. But knowing my stress level, the wonderful nurse practioner who is over all the severe kids, called me last night to give me some insight.
The truth is he should never have had the Glenn and should have been listed for a heart AND LUNG transplant after his first surgery! Of course there aren't tests for everything, but their theory has some solid evidence. I will mention a few points. Ethan had pleural effusions even before birth and they were a MAJOR complication his whole life. They strongly feel Ethan had " leaky lungs" and a "leaky lymph system". This would of occurred at his pulmonary bed, where the blood exchanges the O2 and CO2. Fluid was constantly leaking into the pleural space oustside the lung walls. Treatment for this is DIURETICS to decrease the fluid overload. Ethan was on TONS. He was kept vascularly dry to keep his effusions under control. Because his left ventricle blob was pushing on his right side and his blood volume was always low (because all his fluid was shifting to his pleural spaces and because they had him peeing it all off w/ diuretics) his right ventricle NEVER grew to compensate and be able to handle the workload of the heart.
He needed a heart and lung Transplant. . . but there is a catch. . .
This is why hindsight may not have saved him either. Ethan had a right sided aortic arch (left is what we all have). HLHS & right sided arch is a VERY RARE and very lethal combo. So his aorta turned towards the center of his body as it left the heart and then wrapped around his esophogus (the big surprise from the first surgery). There was TONS of cutting and rebuilding that took place and one of the arteries off his aorta was sacrificed in the repair. That combined with a stressed pulmonary valve made them use a SANO shunt instead of a BT shunt (BT is the normal standard shunt used but would not have provided the adequate circulation needed becuase of the aortic repair). SANO shunts don't last as long and in Ethan's case, began to narrow and become compromised by the time he was 2 months old. Thus Ethan had to have an early GLENN (second surgery) at 3 1/2 months old. If the shunt went on much longer it could of closed off completely and he would have died. So basically we were rushed into Glenn surgery and there was never ample time to explore the true cause of his effusions. When the Glenn is perfomed the shunt is no longer needed.
Yes, I do get UPSET thinking they should have explored it more before the Glenn. There were plenty of signs starting BEFORE he was born. But I have to remind my self they have never seen an HLHS like him before, so they just didn't know what to do. And they followed the only proven/successful course out there for HLHS. However, it was not the course for my precious Ethan.
The other SANO issue is that even if they decided to list him for transplant after his cath instead of scheduling the Glenn, there is no guarantee he would have gotten a heart and lung match in time before his Sano shunt stopped functioning. That is why transplant hindsight is not 20/20. And of course, there is always the question of would the transplant have taken??? Not to mention the reality that we would have to have moved our family to California (which we would have done). There are still unknowns. But the bottom line is medically NOTHING was in his favor, and he suffered a LOT. . . But he also felt LOVE beyond measure from his family, the prayers from his HUGE support base, and from the STAFF that all wanted him to make it. And his journey has taught me a lot. Like no matter how dedicated and determined I am. . . I am not the one in control. But luckily there is a loving Heavenly Father with a plan that allows me to be with Ethan again one day.
I love you Ethan.
PS: It was the heart failure meds that caused Ethan's death. They cause vasodialation of the pulmonary vessels (to allow for better O2 exchange. . .) However Ethan's were already to big and leaky so they were causing more blood to pool in his lungs, and less to go towards his heart. His heart shut down. It is more complicated than that, but the basics is enough for now. I am drained. That may be another post.
PSS: As I am finishing this the cemetary just called and said his headstone arrived and will be installed with in 2 weeks. I am excited, yet can't help but feel another little dagger in my heart at this milestone.
PSSS: Oh my Ethan day. . . Just got an email from Las Sendas (our community association) that they approved my request to have an "Ethan run" and walk to raise CHD awareness and to support families battling CHDs. It will probably be in mid February or early March. More info will come!