Today marks the one year anniversary of our initiation into the neck breathers club. A lot has changed since then. I'll never forget how terrified we were when we found out Faith what getting a trach. I recently looked back at our blog entries from last June and July- Faith had an episode almost every day! We did everything to avoid the trach and g-tube, little did we know then that they were the best thing to ever happen to her. When Faith received her trach it saved her life (a month later when she became vented it GAVE her life).
The trach is such apart of her now- and of us. In a way it has become our identity- we now are in network of "trach families" who get together, e-mail each other to exchange tips and share challenges of raising a child with a tube in their neck. The trach doesn't even bother us anymore. We are scared for the day when she doesn't have it. So when is that day going ot come? Who knows...
Last year Faith's first ENT (ear, nose and throat) doc gave us the impression that she'd have the trach for about a year...he described her airway as "complicated" but the fact that she was on a high flow nasal cannula showed that she could make it without a trach in the not too distant future (the term "making it" is used loosely...having an episode every day is not "making it" in our book...) nevertheless it's been a year and Faith is no where near being decannulated (a term they use to mean without a trach..) Her last bronch was April- her new ENT said that her airway was still really swollen- he couldn't even see her vocal chords. We asked if this was very common- to be this swollen a year after intubation he said "no...I've seen it once or twice..." hmm... that's comforting. Like we said be for this isn't really surprising to us, nor disheartening- the trach we don't mind- now this vent on the other hand we'd give this up in a heartbeat!! Faith was another bronch scheduled for tomorrow- we'll see what they have to say this time.
So Happy Trach Day to Faith- and I guess to us as well. Today is a celebration of overcoming the challenges of taking care of a child with a tracheostomy. We did it! We're doing it! Wow. I never thought we'd become this comfortable or this accustomed to trach life. I am sure a year from now we'll look back and know even more than we do today. No this is something we never wanted to know about nor expected to, but when your trip to Italy is diverted to Holland sometimes you have no choice but to smell the tulips. :)