Theo’s journey has been marked by numerous highs and lows, and October 22nd was no different. Although we had hoped for consistent improvement, the reality of Theo’s condition continues to introduce new challenges. Today, Theo experienced multiple episodes of clamp downs, where his body seizes up, making breathing difficult. During these moments, we observed something alarming — bloody secretions from his trach whenever we suctioned him. This led to an urgent assessment by the ENT team, who examined Theo’s airway to better understand the situation.
The findings were as we had feared: Theo is suffering from tracheomalacia, a condition that weakens the airway and causes it to collapse, particularly during breathing. Specifically, Theo’s airway collapses 1cm above his carina, the point where the trachea splits into the left and right bronchi (illustrated below). The carina is a crucial area in the airway, and any obstruction or collapse here can be extremely dangerous.
Now, we face the question: how do we tackle this issue? There are two potential solutions: Theo could receive a custom trach, or we could increase his PEEP (Positive End Expiratory Pressure), a ventilator setting that helps keep his lungs open. Unfortunately, Theo is too small for a custom trach. The available lengths are too long for his tiny airway, and inserting one could potentially touch his carina, triggering a vagal response. A vagal response occurs when the vagus nerve is stimulated, leading to a sudden drop in heart rate, blood pressure, and other acute symptoms, which poses a significant risk to Theo.
Given the risks associated with the custom trach, we chose the second option: increasing Theo’s PEEP. We raised his PEEP from 13 to 16, and his PIP (Peak Inspiratory Pressure) was adjusted from 56 to 58. While these changes were made to support him, I observed Theo closely today and still feel he is under-supported. I held him in my arms in the crib and watched in disbelief as he exerted his entire body to take each breath, struggling with retractions. Witnessing him work so hard to breathe breaks my heart, and I often question why he has to endure this. It’s overwhelming, and despite my trust in his medical team, I can’t help but feel the burden of watching my baby struggle.
I want to emphasize that the team is working diligently to support Theo, checking every box to ensure he receives the best care possible. We have explored all options, and while it is challenging to witness, I am confident that his team is doing everything they can to help him thrive. Please refrain from suggesting that we seek advice from other hospitals or consider a transfer — Theo is an incredibly complex case, and his medical team is dedicated to his care. They know him best and are most capable of supporting him through these challenges.
Despite the physical challenges Theo faces, I remind myself that he is still, in many ways, a typical baby. Yes, his lung issues and facial swelling are struggles, but aside from these concerns, he is just like any other baby — growing, learning, and responding to love. The true medicine for Theo right now is time and growth. As much as I long for him to come home, I want him to return healthy and strong. I tell him almost daily, “Take as long as you need.” His journey may take longer than we had anticipated, but I believe that time is what will allow him to heal.
I mentioned to Theo’s primary nurse yesterday that if I can manage Theo at his worst right now — when he’s clamping down and I have to act quickly to assist him in breathing — then I know I will be able to care for him when he’s home. It’s a tough reality, but it’s one that empowers me. Every day with Theo is filled with hope, a fight alongside him, and a trust that he will grow stronger. I’m learning patience, resilience, and most importantly, to cherish every small victory, no matter how minor it may seem.
To everyone who continues to send prayers and support — thank you. It means the world to us. We feel the love, we feel the strength, and we hold onto your encouragement as we navigate this challenging journey. Theo is fighting every day, and we are right here with him, fighting too.
Every prayer, every supportive message, every kind word helps uplift our spirits and reminds us that we’re not alone in this battle. It’s tough, but we’re in this together — and together, we will continue to find hope in every small step forward.
Thank you for standing with us, for standing with Theo. We will keep moving forward, one day at a time.
What words of encouragement do you have for Theo and his family as they continue this journey? Please share your thoughts in the comments. 💛
