October 20th was a day marked by both challenges and strength for Theo and his family. As a mother witnessing your child confront serious health issues, articulating the profound emotions and fears can be incredibly difficult. Yet, through every tough moment, you persist in fighting for Theo’s health and your own peace of mind. Today, as you provided your update, it became evident that you are grappling with the overwhelming fear and sorrow that accompany seeing your child in pain.
Theo experienced several desaturation (desat) episodes today, which were alarming. These episodes differ from his typical “clamp downs” associated with his ongoing medical conditions. This time, his oxygen levels fell dangerously low into the 20s, causing his body to turn blue. As any parent would, you felt a surge of terror. Observing your child’s body become still, despite the medical team’s best efforts, is a heart-wrenching experience. The interventions that previously worked when Theo was intubated seem less effective now, and he takes longer to stabilize, heightening the anxiety of the situation.
You mentioned that these episodes might be linked to gas buildup and withdrawal symptoms. This connection makes sense considering the recent tapering off of Morphine. Theo’s body is adjusting to life without it, and withdrawal can lead to a range of distressing symptoms. Babies undergoing withdrawal often exhibit painful and frightening reactions, including sweating, which Theo has begun to show after each episode. This is why you and the medical team suspect withdrawal could significantly impact his current condition.
As a mother, feeling helpless in these moments is natural, especially when the usual medical interventions are not producing the desired results. Witnessing your baby struggle can evoke a torrent of emotions, from fear to frustration to exhaustion. Yet, even in these trying times, you demonstrate remarkable strength and resilience. Your unwavering love for Theo and your dedication to being there for him during these challenging days is truly inspiring.
In addition to the challenges posed by his desaturation episodes, Theo’s care has been adjusted to accommodate his growth. His medications and feeds were recalibrated based on his new weight—9lbs 5oz, a small victory amidst ongoing challenges. Furthermore, his PEEP (positive end-expiratory pressure), which helps keep his lungs inflated, was reduced from 14 to 13. While this adjustment was made due to signs of over-expansion in his lungs observed on x-rays, it has also led to concerning symptoms. Theo is now exhibiting signs of retractions, indicating that he is struggling to breathe. This is likely a consequence of the PEEP reduction, and it’s a delicate balancing act that doctors are continuously managing. The decrease in PEEP could result in elevated CO2 levels, which are being closely monitored with a TCOM monitor. Theo’s CO2 levels have been higher than ideal, ranging from the 60s to 90s, and it’s evident that his doctors are diligently working to find the right adjustments for his care.
Amidst these medical hurdles, your love and calm presence provide Theo with comfort. As you sit beside him, speaking softly and holding his hand, your soothing voice reassures him that he is not alone. Although the situation may feel insurmountable at times, your strength and commitment offer him the security and comfort he needs. Every small act of tenderness you show him has a significant impact, even if it may not feel sufficient in the moment.
Despite the challenging moments today, there have been brighter instances that remind you of Theo’s progress. Upon arriving at the hospital last night, you were greeted by the sight of Theo in a big boy crib. While this may seem like a minor milestone, for you, it symbolizes a significant step in his journey. It represents his growth and strength. Additionally, the joy of dressing him for the first time, now that the midline in his right arm has been removed, serves as a beautiful reminder of the small victories that help you navigate the toughest days. These moments, though seemingly insignificant, are precious reminders of how far Theo has come.
Throughout this journey, your faith remains a steadfast source of strength. You’ve chosen to remind yourself and Theo that “we can do hard things” because your strength is rooted in Jesus. This faith not only comforts you but also serves as a guiding light during times of fear and anxiety. When uncertainty looms and you feel overwhelmed, you remind yourself that “The Lord is my refuge.” This unwavering trust carries you through the most challenging days, and it’s a message you’ve shared with others who may be facing their own fears or doubts. In a world filled with challenges, this kind of faith and strength can serve as a powerful reminder to others that they are not alone.
As you continue to navigate this difficult path with Theo, know that your strength is truly inspiring. Every update you provide reminds us all of the depth of your love and commitment to your son. The struggles may feel overwhelming, but you are managing it. You show up for Theo every single day, and that is something remarkable.
Please keep Theo in your thoughts and prayers. He and your entire family need all the love and support the world can offer right now. Your ongoing strength, faith, and love for Theo will guide him through these challenging days. We are all here, supporting you, praying for Theo’s health, and sending our love and encouragement your way.
Stay strong, and remember that you are never alone on this journey.
