This Friday we head back to Cincinnati for a scope of Evie’s airway. Now that she’s all healed up from the tonsils and jaw distraction hardware coming out, it’s time to assess where she’s at. The ENTs will look at all the areas we’ve fixed (bilateral choanal atresia, tonsillectomy, jaw distraction) and decide if her upper airway looks good enough to proceed with the tracheal reconstruction as the next step. Either things will look good and we’ll schedule that surgery or something else will need to be fixed. There’s probably a third option that we haven’t thought of, since that’s usually how Evie swings things.
Everyone keeps asking if we’re excited about the possibility of the trach coming out and honestly, we’re torn.
Obviously, there are down sides to the trach. She requires lots of suctioning, she can’t vocalize due to the subglottic stenosis, it eliminates the roles of the nose and mouth in filtering the air she breathes in, it can get plugged and make her unable to breathe, and it’s very small, making it difficult for her to get enough air in sometimes.
But there is one HUGE pro that we love: it’s a stable airway. She doesn’t need to be intubated for surgeries, just hook the vent straight up to the trach. She has a clear path for oxygen when she needs it. We can suction out her airway without trauma to the surrounding tissue. Those are REALLY big perks!
Once the trach comes out, we won’t have that stable airway anymore. When she gets sick or needs surgery, things will be MUCH more dangerous. That scares us a whole lot.
Because the surgeries won’t stop with the tracheal reconstruction.
Her airway will need to be monitored along with her other issues. And who knows if she’ll get sick less often without the trach? Some of her bloodwork shows a bit of an improvement with her immune system which is great, but is it enough? Will giving her nose and mouth back to her immune system make her less likely to get sick and less severely sick? We won’t know until we try.
We’re excited about the possibilities for Evie with a life that is trach-free, but we’re also keenly aware of what we’d be losing if the trach comes out. Next winter, I expect we’ll be even more paranoid than we are NOW! How is that even possible, right?
We’d appreciate your prayers for Friday, that Evie handles the anesthesia well again and we get good news. Of course, good news or bad news, it will be stressful news. Either we discover more issues that need to be dealt with or we decide to move forward with a major surgery on her airway. Or that third unknown option that is probably the most likely with our curveball throwing girl.
Please also continue to pray for the little boy with CHARGE that is fighting for his life. He desperately needs a miracle.