Navigating Camilo’s health has been a rollercoaster, where every minor change brings both relief and worry. Recently, we’ve observed a positive trend: Camilo’s weight has been on the rise, which initially appears to be a good sign. Four weeks ago, he weighed 25.6 kg, and now he is at 29.3 kg. While this gain is significant, it also serves as a reminder of the fragile balance we are constantly managing. We are thankful to see the scale increase, but we must remain vigilant, monitoring whether this weight gain is due to genuine nutritional improvement or simply his body retaining excess fluid.
For the last three weeks, Camilo has been experiencing vomiting and diarrhea — symptoms that have only recently started to improve. This has made it even more difficult to determine how much of his weight gain is beneficial and how much might be attributed to fluid retention. Despite an increase in his diuretic medication, he continues to retain fluid, which has raised some concerns. While we remain hopeful, we understand that this is a delicate situation that requires close observation.
Recently, Camilo had an echocardiogram — a test to evaluate his heart function — to assess his condition. This echo, conducted before we noticed significant fluid retention, indicated that his ejection fraction and left ventricular strain were slightly off compared to previous results. While these numbers are not immediately concerning, they can sometimes signal early signs of mild rejection. Therefore, we must remain vigilant, even though we are not in a state of panic. We are simply monitoring the situation closely and will follow up as necessary.
With the fluid retention becoming more apparent, the medical team is planning another echo soon and will also check his BNP levels, which are indicators of heart function. This will help us understand what is happening and whether the fluid gain is related to any heart issues. Additionally, Camilo has a heart catheterization scheduled for November 5th. This procedure will help confirm whether there is any rejection or other changes in his heart function. While we are thankful that his previous heart catheterizations have shown no signs of rejection, we remain watchful. We are steadfast in our faith that his golden heart is not in distress and that the challenges we are facing now are part of the natural healing journey.
On a brighter note, we are witnessing improvements with Camilo’s gastrointestinal (GI) issues. His treatment for Small Intestinal Bacterial Overgrowth (SIBO) appears to be effective, and he will continue the antibiotic for another week. Furthermore, Camilo has begun a new series of G-CSF shots, which stimulate his bone marrow and enhance his immune system, and he has been responding positively to these as well. These advancements provide us with hope and allow us to breathe a little easier as we navigate this lengthy recovery process.
As always, this journey imparts lessons we never anticipated. It is a path that demands patience — to pause, breathe, and trust the process, even when the future seems uncertain. We have learned that perhaps this phase of our lives is not about hastening to the next victory or constantly seeking the next milestone. It is about learning to find peace in the present moment, to appreciate what we have already received: that Camilo’s heart continues to beat strongly, filled with grace and purpose.
The path ahead will certainly present its challenges, but we are clinging to hope. We understand that regardless of what lies ahead, Camilo’s strength and resilience will guide us. We are endlessly thankful for the support, love, and prayers from everyone accompanying us on this journey. With each passing day, we are reminded of the power of faith and the significance of trusting in the unseen.
We kindly ask that you continue to keep Camilo in your thoughts and prayers, that his heart remains strong and that the healing process continues for both his body and spirit. With every update, we move forward with gratitude, knowing that Camilo’s golden heart is not merely surviving — it is thriving. 💛🙏
