Well, we did it! We survived another year at this thing called the “trach life”, and yes – it’s kind of getting easier and easier as time goes on. As previously mentioned (and what also sparked this very emotional post), while I still have my moments and I can’t wait to get off the vent (is that too much to ask for??) – I feel like we’ve really embraced this situation for the most part, and found a nice little rhythm and state of true happiness.
In full disclosure, I honestly thought we would have already been decannulated (or very close too) based on the original timeline our Edmonton ENT estimated (the one who actually did the procedure), and would have never dreamed that we would be in almost the exact same place that we were in last year. However, it was just an estimate based on the information he had at the time. Every baby is just so different, and there are so many variables to take into consideration. Yes, there are many that decannulate in a very timely manner and quicker than anticipated, but Nick and I have come to terms that isn’t in the cards for our family and have adjusted accordingly.
Instead we generally focus on other accomplishments and milestones Evanna has achieved – and none of them would have been possible without her trach + vent… so we so incredibly grateful for this option and how it’s truly blessed her life. Lately, we’ve been getting a lot of compliments at how “healthy” Evanna’s been looking, and our medical team is extremely pleased with how well she’s been doing over the past year. Evanna’s very quick recovery from her 4th openheart surgery (not to mention how stable she remained while awaiting surgery) was a huge indicator to her health care providers on how far she’s come over the last 12 months, and they are so much more optimistic going into April’s bronch.
To celebrate this “tracheoversary”, I decided to film our bedtime routine to give everyone an idea of what that entails (thanks to our nurse Carmen for filming a few parts), and the difference having a trach brings to it. Nick and I often do it together when we’re both home (though Nick tends to take the lead as he’s a tad more efficient than I am), but given Nick’s work schedule and the times I’m away, there are many times we do it on our own. The biggest thing to note is we only do “trach tie changes” when we’re both present, but because that part doesn’t need to be done everyday, it’s not a huge deal, and just ensure we are doing a quick stoma clean before bed.
To end, I just want to say that we’re incredibly thankful for everyone who’s involved in our life because of the trach, and it’s been quite the experience to say the least. From all the staff we’ve been lucky to meet within the PICU’s in both Edmonton and Calgary (intensivists, surgeons, specialists, RT’s, nurses, lovely fellows, residents, social workers, child life specialists, dieticians and pharmacists), ALL of Unit 2, the whole respiratory team (Respirologists, clinic RT’s & nurses), a very accommodating cardiology team (and the very patient ECHO techs…as the trach/vent makes those exams slightly harder to work around), our own private homecare nurses (who seriously deserve there own entire post) who watch, love, and care for Evanna on a daily basis. In more recent months, we've added some wonderful therapists to our care team, and know that by the years end, that circle will only get bigger. Finally, all of our wonderful followers, friends and family who have stuck by us and continued to show so much support for us.
xo The Irvine Family
xo The Irvine Family