Last week this sweet boy started getting sick again. By Monday he was really, really sick. Sick enough that we scheduled a dreaded esophagram to check for leaks in his esophagus.
Unfortunately, our fears were confirmed, he once again has a big, gaping hole in his esophagus. A bigger hole than any of us have seen before. As the week has gone on he has gotten sicker still.
We reached out to Dr. Hess, we still haven’t heard back from him with a plan. In the meantime we trusted one of my fellow EA mamas and consulted with the surgeon who saved sweet Ireland’s esophagus (it’s actually colon in place of esophagus, but good enough!). He was quick to get back to me, and we felt really comfortable with the team approach he offered. They will do a full evaluation and their team will watch his scope together to discuss him. They will develop a plan and share it with us before moving forward, we are hoping they can patch his esophagus without opening him up, but worst case scenario could have them replacing part of his esophagus with colon.
We still love and trust Dr. Hess, but with this problem happening over and over we have to think about alternate ways to heal him. Isaac’s right lung is taking a beating, it is already showing us that. Dr. Hess told us that he cannot open Isaac’s chest again, and we believe him. It is so scary to not know what to do, and to have to build trust in a whole new team.
Of course, this won’t be easy, because the new team is in Cincinnati….. and we decided we were going at about noon today and need to head out in the morning. Today has been busy, lots of calls to set things up, lots of packing for both boys, lots of odds and ends. In the middle of all of this the love we have been shown is once again what is keeping us going. The calls, texts, emails and support from friends and family have been overwhelming. We know we are not in this alone – we know we are loved and supported in a huge way. We know the gift Isaac has brought into our lives with all of this support and love, a
and we are so happy to share him and his strength with everyone.
We will keep the updates coming as we know more.