Kyra

tracheobronchomalacia hashtag performance

#tracheobronchomalacia is a health condition characterized by weakened trachea and bronchi, leading to breathing issues. Awareness, support, education, symptoms, treatments, community, sharing experiences, advocacy, respiratory health, pediatric focus, adult cases.
It’s an interesting feeling to think back to 6 months ago, when Evie had her last airway surgery and directly after we unexpectedly attempted to decannulate her. I trusted my instincts and vocalized my concerns, especially around her safety with the upcoming flu season. As hopeful as I looked and felt on the outside, deep down I knew she wasn’t ready. She just simply needed more time for her airway to get stronger. While I always try to be her voice, her body does a beautiful job for her. Maybe not verbally, but in other ways in which we only see when we’re paying attention. Her body wasn’t ready, and her body made it clear. It was a blessing in disguise. Two weeks ago, we attempted to completely ween Evie from her ventilator. This was in an attempt to improve her rest periods, to minimize the stress on her trachea from constantly pulling her ventilator off. It was another trial and error. Her CO2 levels came back high from the previous baseline ones we drew at the time of this attempt. Before we had a chance to redraw them and double-check her levels, Evie tested positive for Influenza A. This week she’s been dependent on her ventilator and all of her airway support. Her body spoke to us and did what it needed to protect her. To keep her safe. While it’s not always the greatest feeling to be taking one step backwards in this journey, there’s a purpose to it. There’s opportunity within it. I hope our own story can be a reminder that just because something in your journey doesn’t go accordingly, doesn’t mean that there can’t be room for another purpose. One step at a time. 💛 - - - #airwaymalacia #medicalmom #laryngomalacia #tracheobronchomalacia #preemie #chroniclungdisease #trachbaby #gtube #medicallycomplexbaby #medicallyfragilechild #disability #trachmom
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It’s an interesting feeling to think back to 6 months ago, when Evie had her last airway surgery and directly after we unexpectedly attempted to decannulate her. I trusted my instincts and vocalized my concerns, especially around her safety with the upcoming flu season. As hopeful as I looked and felt on the outside, deep down I knew she wasn’t ready. She just simply needed more time for her airway to get stronger. While I always try to be her voice, her body does a beautiful job for her. Maybe not verbally, but in other ways in which we only see when we’re paying attention. Her body wasn’t ready, and her body made it clear. It was a blessing in disguise. Two weeks ago, we attempted to completely ween Evie from her ventilator. This was in an attempt to improve her rest periods, to minimize the stress on her trachea from constantly pulling her ventilator off. It was another trial and error. Her CO2 levels came back high from the previous baseline ones we drew at the time of this attempt. Before we had a chance to redraw them and double-check her levels, Evie tested positive for Influenza A. This week she’s been dependent on her ventilator and all of her airway support. Her body spoke to us and did what it needed to protect her. To keep her safe. While it’s not always the greatest feeling to be taking one step backwards in this journey, there’s a purpose to it. There’s opportunity within it. I hope our own story can be a reminder that just because something in your journey doesn’t go accordingly, doesn’t mean that there can’t be room for another purpose. One step at a time. 💛 - - - #airwaymalacia #medicalmom #laryngomalacia #tracheobronchomalacia #preemie #chroniclungdisease #trachbaby #gtube #medicallycomplexbaby #medicallyfragilechild #disability #trachmom

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