the news……..

The news from Cincinnati has left us more confused than anything else. In what should be good news, the hole in Isaac’s esophagus has closed, and we are happy to hear that, but more frustrated then we’ve been in a long time.
The frustration comes from the fact that we are once again left waiting. The team in Cincinnati made some discoveries that concern us. They determined that Isaac has little to no motility (movement) in his esophagus, and that his stomach sits high up in his chest cavity – contributing to his horrible reflux. This reflux is being blamed for the issues he has had, as he is aspirating frequently.
The decision to watch and see what happens is frustrating because we know that Isaac will more than likely get another hole in his esophagus, they happen pretty much like clockwork. We also know that our son is living with pretty horrendous reflux, which can’t be comfortable.
While the surgery to replace the esophagus with colon is major, and risky it may be the best chance Isaac has to be comfortable. Logically, we understand the decision to avoid any surgery we can. But our hearts hurt for this kid who wants to eat and is being told he shouldn’t, this kid who gets sick a lot more than he should because his esophagus consistently tears, this kid who deserves a chance to be as normal as possible.
Isaac is just a kid, and he’s been through so much. We are at a loss as to how to proceed.
We like to know what is coming next, we like to plan and we like to be able to prepare Isaac. Right now we don’t have any of that.
For now, we wait and see what Isaac has in store for us next……..

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