For so long, the daily routine in the hospital has been filled with uncertainty, prayers, and a constant focus on milestones that feel just out of reach. But yesterday, for the first time in a long while, we had a reason to hope that the end of this journey—at least the beginning of a new chapter—is finally within sight. Camilo, our brave little warrior, is closer than ever to being discharged. After months of intense treatments, setbacks, and immeasurable strength, it feels like we are on the cusp of something we’ve dreamed of: bringing our little boy home.
Since starting treatment for SIBO (Small Intestinal Bacterial Overgrowth), Camilo has made significant strides with his GI health. For those who have followed Camilo’s story, you know that his road to recovery has been long and difficult. From the initial stages of his heart transplant to dealing with severe feeding issues, we’ve fought through each challenge with hope, patience, and, above all, unwavering love. But now, after all this time, the light at the end of the tunnel is starting to shine brighter.
The most significant hurdle we’re still focused on before discharge is ensuring Camilo can tolerate his GT (gastrostomy) tube feeds. Over the past few weeks, we’ve been working hard with his medical team to gradually increase his intake through the tube. A few days ago, Camilo underwent an indirect calorimetry test, which gave us the exact number of calories his body needs each day to thrive—1,800 calories, to be exact. Right now, Camilo is able to take in about 1,000 to 1,300 calories by mouth. This means that the majority of his caloric intake will come from the tube feeds, and as of now, he only needs about two bottles a day, a huge milestone compared to the seven bottles he used to require.
We started slow with his tube feeds, doing half a bottle at a time. Camilo had a setback when he threw up after the first attempt, but the second round was much more successful. Today, we took the next step and increased to a full bottle. We’re watching closely, praying that he continues to tolerate the feeds and doesn’t experience any further issues. If he continues to progress this way, we can move forward with the plan for discharge and eventually get him back to the comfort of a hotel where we can manage his care in a more familiar setting.
Despite the progress, we are not out of the woods yet. There are still a few key procedures that Camilo will need before he can truly be on the road to recovery. One of the most important is a heart catheter biopsy to check for signs of organ rejection. As with any transplant patient, the risk of rejection is always a concern, and it’s something we must continue to monitor closely. In addition to that, Camilo will need a dental procedure that requires anesthesia—yet another step in the long journey of getting him stronger and healthier. Fortunately, his heart transplant team, hematology specialists, and GI doctors will continue to follow him closely as we navigate the next phase of his care.
As we approach this next stage, our family continues to pray for Camilo’s strength and healing. Each day that he makes progress is a victory, but we know the journey is far from over. Even though we are closer than ever to having him home, we have to make sure he’s truly ready. That’s the hard part—knowing when to take that leap and trust that he is strong enough to be discharged. After so many back-and-forth hospitalizations, we are cautiously hopeful that this will be the discharge that lasts, that finally brings us home for a longer stretch of time. We’ve been through so much already, and the last thing we want is for Camilo to face any more setbacks.
The emotional toll of this journey has been immense. Not only have we faced the overwhelming stress of Camilo’s health struggles, but we’ve also had to navigate life with four other children back home, all while balancing hospital visits, treatments, and staying strong for Camilo. My husband has remained back home, working tirelessly to support our family financially and saving every penny to help pay for Camilo’s ongoing medical care. We are a family that has been tested in ways we never imagined, but we’ve come through it together—stronger, more resilient, and more committed to each other than ever before.
We want to thank everyone who has supported us through this journey—whether through prayers, messages, or simply holding us in your thoughts. We have felt your support in countless ways, and it has kept us going. Camilo is a testament to the power of love, perseverance, and community. He is fighting a battle that most adults would tremble at, but he is doing it with the strength of a warrior.
As we prepare for discharge, we are filled with gratitude and hope, but also with the understanding that there are still challenges ahead. This road will not be easy, and there will be more hospital visits, more tests, and more procedures to come. But with each step, we are closer to the goal—bringing Camilo home, healthy and strong.
Please continue to keep Camilo in your prayers. We are excited to finally reach the point where we can return to the hotel and continue his recovery, but we know we still have a long road ahead. Thank you for being part of our journey. Together, we’re getting closer to a brighter future for Camilo and our family. 💛
