Hurdles

So, off we went to the hospital with hope in our hearts. Unfortunately, things didn't go as we were hoping.

please note: this is hard to explain and the doctors used a diagram to help us understand. I will try my best to get the gist of it out.

The doctors were unable to correct the aortic narrowing in the cath lab. The narrowing passes over his carotid artery (leading to his brain/head). The doctor felt it would be unsafe to stent that because it was too risky. They decided it needed a surgical repair...soon. Additionally, we've mentioned before that somewhere down the line a left subclavian blockage developed in one of his arteries. This was not initially a huge concern....however, it is making it difficult for him to have the "normal" surgical repairs. His body is compensating for this blockage by creating new collateral pathways that are troublesome. The cath procedure also showed that something (one of these collaterals?) is dumping blue blood into the heart. Unfortunately, the doctors really are not sure how to handle that blockage and fix that "dumping". His team of experts are going to be meeting on Thursday to discuss his case and try to come up with a plan for how to handle the blockage.

What we know now is that a surgery is in his near future (possibly in the next two weeks). This is an additional surgery that we were not expecting. He will still need the Fontan procedure. They are going to place a bigger sano shunt to allow him more time to grow. He needs to be larger to do the Fontan.

We are devastated. We are angry. But mostly, we are scared.