A Rough Week

I apologize for the lack of updates this week. Sometimes, it’s just too hard trying to put things into words. We still have no idea what is happening with Evie. Once again, all testing seems to show a perfectly healthy little girl. She is coming out of this episode and doing much better today. We have another test scheduled for Tuesday which I’m pretty sure is done under general anesthesia and hopefully that gives us some answers. If not, then I imagine we’ll head home and have to wait for all of this to happen again. We’re frustrated, but not with the hospital, just with the mystery. And we’re very worried about what is going on inside Evie’s complex little body.

We did get some good news with her scheduled scopes we did on Wednesday. The inflammation in her airway, lungs, and esophagus was significantly better. But as much as ENT would like to work towards getting the trach out, her pulmonologist thinks the trach needs to stay a while longer to keep Evie’s lungs healthy. We expressed that the only thing that saddens us with the trach is how difficult it is for Evie to vocalize and how much that holds her back so the decision was made to remove some of that scar tissue above Evie’s trach to open things up just a bit more. This should make vocalizing much easier and relaxes our timeline to trach removal. It’s important to remember that the trach is not what holds Evie back, it’s the other issues with her airway and allergies and such. The trach itself is what keeps Evie’s lungs healthy, allows her to run around and breathe with ease, and live her life. It also keeps her safe during sickness and surgeries. We LOVE the trach. We’re not anxious to see it go. We’re only anxious to lessen its effect on her communication. So that surgery along with checking on her lungs again will hopefully happen at the beginning of the year.

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