he’s complicated….

he lost a tooth!

he lost a tooth!

This week I got to have a talk with Dr. V, the surgeon in Cincinnati who is leading the team that is now working on Isaac. As with every conversation we have ever had with a medical professional he started with “well, Isaac is pretty complicated”. And he IS pretty complicated, but he is also our beautiful almost 6 year old.
It’s hard to look at that gorgeous face and know how very complicated he really is. It’s also hard to know that these “complications” get in the way for him to the extent that they do, and that they are what is predicting his quality of life at this point.
What it comes down to is that Isaac’s lungs need protecting more than anything. The biggest concern is the dirtying of his lungs, and what that could do to his respiratory status later in life. We have never placed emphasis on his lungs before, but this amazing team is. They are discussing him a lot, and they are determining the best way to make his life fully livable.
We are very excited about what we have heard so far, and we are happy to have once again found a team that is willing to take on an uber complicated little boy.
As Dr. V and I talked shop he asked how Isaac is doing, and I told him about this our latest excitement (see above!)….. Isaac lost a tooth! He was nearly as excited as we were, and the beauty of a little bit of “normal” excitement wasn’t lost on him. That was when it started to make sense, a surgeon who understands the excitement of losing a first tooth….. it is pretty complicated, huh?

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He had a GREAT day!

Best day ever!

Best day ever!


Today, Isaac declared it was the “best day ever”. This is because he got to see his friend “Shout” from the Fresh Beat Band. He actually got to see the whole band, but he feels a connection to his Shout. Because Isaac had such a great day I’m ready to lay out what he’s facing to repair that esophagus, I have tried to write this post a few times, and always get bummed and stop.
I talked to a member of the Cincinnati team this week, and the conversation threw me for a loop. Essentially, they are proposing something bigger than we had expected (file this under “be careful what you wish for”). We have hoped and prayed that they would see the problems that we have seen and come up with a way to fix them. The fix they are proposing is BIG.
Broken down, what is being proposed is something similar to a gastric bypass. They will use his small intestine and just bypass his esophagus and stomach. This will give him exactly what we have hoped for – a way to eat small meals (safely!) and access to G tube feeds (much more user friendly). The reason this one was so hard on us is that it is an incredibly permanent fix. What we’ve done all along is patching, with the intention of these patches becoming fixes. The patches are not fixing him, not even a little bit.
The go big or go home approach is one we support. We know that Isaac’s issues are twofold, he has the crappy esophagus with the recurring hole and he has horrific reflux, which causes him to aspirate into his lungs – not ideal for a healthy life.
The easy fix, just replacing his esophagus with colon would solve the crappy esophagus problem, but not the reflux/aspiration problem. There is no reason to do another patch. We KNOW this. The problem is, how do we wrap our heads around such a permanent fix and know it’s right? How do we commit Isaac to a lifetime of small meals and potential of G tube feeds forever?
We have wrestled with this all week. We still have time to think about it and discuss it with the surgeon.
Luckily, we had already bought Fresh Beat Band tickets for this weekend, sometimes we have to let go and have fun to put it all in perspective. I reached out to our friend Shout yesterday, and of course he brought Isaac backstage today.
During the concert today I watched Isaac sing and dance with his brother and cousin. He had no worries. Sometimes that is what I need to let go of my worries, to see him in his no worry state. The more I think about this surgery (and I think about it A LOT), the more I realize it may just be the best thing for Isaac. We chose this team because they are good, because they think outside of the box and they are devoted. They share our concerns, they want to fix them as much as we want them fixed. They refer to Isaac as “our boy”. This is what has driven us to find the best doctors all over the country, a devotion and ability to fix that we are willing to travel to.
So, because Isaac had a good day, we all had a good day. Because of this good day we can now look at the potential surgery he faces in a new light.

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