Misunderstandings….

Published: October 18, 2009Posted in: Aiden's UpdatesTags:

What a crazy train this has been. Our interests are simply what is best for our son, and what gives him the better chance. There was a giant mis-communication on the Denver side that got completely misunderstood by us. The word “ignore” in my first meeting that drove me to Dr del Nido and finding other options wasn’t the case at all. I prayed for an answer to the questions: Procedurally what would Boston’s approach be versus Denver and also, at what level of agressiveness would each heart center take so save my son. I got my answer from Dr. del Nido, which was empowering.. today, Sunday I received my response from Denver. Procedurally it would be 100% the same, Dr. Cambell (Master Surgeon @ Denver) has repeated to the T exactly what Boston had said. When I had asked have you ever dealt with leaky valves like Aiden’s in a partial heterotaxy case, situs invertus mostly, he said the heterotaxy does nothing in the case of the valve, a valve is a valve (which made complete sense to me). He also said that he has repaired many valves (he has 28 years experience, and 85 publications in medical journals on Congenital Heart Defects) so i’d say he fits the bill for the kind of guy I want taking care of my son. When it comes to Boston it’s important to note we WOULD NOT have Dr. del Nido personally be doing the surgery (which is kind of why I wanted Boston in the first place, when I thought Denver wouldn’t even attempt to repair the leaky valve). That has a huge impact on me personally. Denver is nothing to snub at, it’s a multi-regional Children’s Hospital that covers an 8 state region. It’s not like we’re in a mud hut and a witch doctor is weilding a crude cutting instrument. It’s also important to note, Dr. Cambell was very compassionate on the phone and explained his procedure in great detail, I appreciate his passion for his field and how many lives he has saved. There is one major difference I think between Boston and Denver and it’s not the surgeons. Aiden is said to be probably the only one in the world how his anatomy is structured, the surgeon that repairs him the first time is going to need to know what he looks like on the inside, making mental notes for future repairs. Going to Boston to have the first surgery done, then returning to Denver for repair surgeries in the future would leave Dr Cambell with no idea how everything was at first, which I never thought about before but came to me when I prayed for help with an answer. It’s probably also important to mention that Dr. Cambell has fixed more than 2 leaky valves, he’s done it alot. It just all depends on what “it” looks like when he’s operating (there is no way to know pre-surgery) and how Aiden does after. That I can deal with, the Lord has been great to us and I know he will take care of everything. I’m not concerned about my personal wel-being but I have to be for Aiden, we are closer to our very large central support network in Colorado, as well as in close proximity to the Children’s Hospital. There also isn’t the added risk with transport. Everything in this situation NOW says “stay in Denver”… we have a VERY QUALIFIED surgeon that has repaired leaky valves 100%, he’ll be personally doing the surgery as opposed to Dr. del Nido who would be having a Jr. surgeon perform Aiden’s complex surgery AND it’s important they know his anatomical roadmap. So our decision is to stay in Denver and have surgery. With the fact that Aiden is doing perfectly fine and has no infections, stable and no signs to immediately need surgery we still are postponing surgery on Monday to Wednesday, that way our support network is in place and we are ready to face the next step of this journey. At no time would we ever put Aiden at an unnecessary risk and if he was showing any emergency signs of needing the surgery immediately we would not postpone anything. Aiden’s best interests are our first priority and we are making sure that the right decision is made in his care. Nothing is 100%, it’s all up to what Aiden looks like when they operate as well as his post-surgery milestones & future care. Keep Baby Aiden in your prayers this coming week as he’ll be recovering from his repair surgery, we pray that his valve is 100% repairable and Aiden makes a miraculous comeback. I feel comfortable in Denver’s hands, especially after speaking to his heart surgeon here, now I have a clear picture and a clear choice.

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