Theo’s journey has been one filled with both challenges and moments of hope. On October 21st, his family received a mixture of both — difficult news about his respiratory struggles and moments of joy as they witnessed the kind of progress they’ve longed for. Today was another day where they had to navigate the highs and lows of life in the NICU, but it was also a day where small victories were celebrated, reminding them that hope remains even in the darkest times.
Theo had a relatively stable day, though he did experience several desaturation episodes, which have been a recurring challenge. These episodes, where Theo’s oxygen levels drop unexpectedly, are one of the many complications his doctors are closely monitoring. After a conversation with one of his Bronchopulmonary Dysplasia (BPD) doctors, it became clear that Theo needs more respiratory support during his sedation weaning process. The team agreed that while progress is being made, Theo’s comfort and respiratory health must be prioritized during this critical phase. Tomorrow, the BPD team will reevaluate his care plan, hoping to adjust his respiratory support and minimize the desat episodes.
While the medical team works tirelessly on Theo’s immediate needs, his parents, too, have been actively advocating for additional support. Today, they requested that an ENT (Ear, Nose, and Throat) specialist assess Theo’s airway for signs of bronchial tracheal malacia, a condition that causes the airways to collapse due to weakness. If this condition is confirmed, Theo may need a custom-fit tracheostomy tube, a significant decision that could have long-term implications for his care. It’s a daunting possibility, but one that they are ready to face head-on, knowing that every step taken is for Theo’s well-being.
Despite the ongoing medical challenges, today also brought a much-needed ray of sunshine: Theo’s Lolli (grandmother) came to visit him. The emotional significance of this visit cannot be overstated. Theo’s family has been through so much, and seeing Lolli bring supplies, including crib sheets and NICU-friendly outfits that accommodate his leads and wires, was a reminder that they are not alone in this fight. What made this visit even more special, however, was that Lolli was able to hold Theo for the very first time.
This was a moment that filled their hearts with joy. Toby and his wife had been hesitant to let others hold Theo while he was intubated, knowing how fragile his condition was and the risks associated with his ongoing treatment. They had waited until Theo received his trach, a stable airway, before allowing others to hold him. The decision was born out of love and caution, but today, Lolli was finally able to hold her grandson. The sight of Theo in his grandmother’s arms, safe and secure, brought tears to everyone’s eyes. It was a moment of pure love, a reminder that even in the midst of the hardest times, the strength of family is something that cannot be underestimated.
Theo’s medical team also introduced a new approach to help reduce his swelling, particularly around his face. Physical therapy (PT) suggested trying kinesiology tape (KT tape), a method that is often used for reducing facial swelling. At first, Theo’s family was unfamiliar with this technique, but after researching it, they discovered that KT tape has been shown to effectively reduce edema. This new approach is just one example of the creative, patient-centered care that is helping Theo along his journey. The use of KT tape, though small, is a reminder of how each day brings new strategies, new solutions, and new opportunities to improve Theo’s comfort and quality of life.
Though Theo’s path to recovery is far from easy, today’s update also marks significant progress. The medical team is actively addressing Theo’s respiratory needs, working to minimize the desat episodes. His primary nurse, who has been with him through much of his journey, continues to be a steadfast source of support. She knows Theo’s needs better than anyone, and her experience and love for Theo have been vital in helping manage his care. Having her back with Theo today was another small but meaningful victory for the family.
In addition to medical adjustments, tomorrow brings the promise of more progress. Toby, Theo’s father, will spend the day with him at the hospital, which always provides the family with a sense of comfort and connection. The family also plans to meet with a couple of DME (Durable Medical Equipment) companies who visited the bedside today. These companies are working with the family to ensure that they have the proper medical equipment when they are able to bring Theo home. Although the journey to bring Theo home is still some time away, the thought of preparing for that next phase brings hope and a sense of forward momentum.
Through all of this, Theo’s family continues to be overwhelmed by the outpouring of support from friends, family, and strangers alike. The prayers, messages, and acts of kindness have been a source of strength and comfort. Every prayer, every word of encouragement, has been felt deeply by his parents, as they navigate the emotional rollercoaster of caring for their son. They know that while the road ahead is still filled with uncertainty, the love and prayers that surround Theo are making a difference. Each day, they celebrate the small victories and trust that, no matter what comes next, they will face it together.
“Thank you all for your continued prayers,” they shared with a heart full of gratitude. “We are not out of the woods yet, but we’re getting closer to the day we can bring Theo home. Please keep the prayers coming, as they make all the difference.”
As they look to tomorrow and the future, Theo’s family remains hopeful. They trust that the progress made today will continue, that the love surrounding Theo will continue to sustain him, and that the miracles they have seen will carry them through the challenges still ahead.
Theo’s journey is a testament to the power of love, resilience, and community support. No matter how hard the journey becomes, his family continues to believe that their little fighter will overcome every obstacle in his way.
What’s your message of support for Theo and his family? Share your thoughts and prayers in the comments below. 💛