The Journey to Trach Free Has Started (and I’m Not Ready)!

We’re still here at my parents’ house resting and waiting, but leave tomorrow for Cincinnati again. It’s been so nice to see our other daughter and relax a bit. I wish we were home, though.

When we left for Cincinnati, we thought this would just be a “discovery” trip. They’d do some tests, figure out when they would want to do her tracheal reconstructive surgery and then head home.  Some of the tests required her nose to be open, so we thought they would open it, place stents, send us home, and then we’d come back in a few weeks for the testing. It honestly never occurred to me that they would attempt to open her nose once and for all. We feel like we jumped onto a moving train. Or maybe we thought we were touring the train briefly and it took off for its destination instead.

Don’t get me wrong.  There is a part of me that is excited that we’re starting the process to hopefully get the trach out, but I just wasn’t quite ready to start yet.  We’re out of practice! We’ve been spoiled by the slower pace of the last year.  Before this trip, Evie’s last surgery was June of 2012!  We’ve had fewer medical appointments, but increased therapy. It’s been such a nice year for Evie’s progress. I just really don’t want to go back to constant appointments and surgeries.  Wow, that’s pretty whiney of me.

So that’s where we’re at. We’re still just stunned that the journey has started.

Wednesday’s scope will hopefully give us a good idea of what the process to keep her nose open will look like. If she already has extensive scar tissue growth, we may be staying longer to have it opened up again. If it’s looking pretty good we may be able to head home for a few weeks before they need to look at her nose again. We’ll just have to wait and see.

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