There are moments in life when everything seems to hang in the balance, and we find ourselves holding our breath, waiting for a sign of hope. Right now, Jaxen is in one of those moments—a critical juncture in his ongoing battle. His infection markers are on the rise, and it’s a concern that has shaken everyone who’s been walking this journey with him. Every change, every adjustment, is done with one purpose in mind: to help him heal, to give him a chance to continue fighting…
Today, the medical team made several significant changes in an effort to eliminate any possible sources of infection and to give Jaxen the best chance at recovery. It’s a delicate balance of decisions, hoping that each new step will bring him closer to a path of healing.
First, a new PICC line was placed, a procedure that allowed them to remove the central line that had been in Jaxen’s neck. His left hand, once home to an IV, was no longer usable as the IV had failed, so it, too, was removed. Then, in a further effort to reduce any sources of complication, his chest tubes and catheter were taken out. Each of these steps is a small victory, a shift in the direction of recovery. But there is still so much more to face.
Throughout this journey, there have been moments of immense fear and uncertainty. Jaxen’s body, fragile and tired, has been through so much. The latest change, removing the paralytic, is one of those pivotal moments. When the paralytic was lifted earlier today, it became apparent that none of the narcotics were providing him relief. His body, so accustomed to the drugs, didn’t seem to respond. The medical team acted quickly, switching him over to Propofol.
For now, Propofol seems to be working much better. The change, though subtle in nature, has been monumental in how Jaxen has responded. When the paralytic was removed at 4 pm, the relief was palpable. Unlike in the past, when he would become agitated and unsettled, Jaxen has remained more calm. It’s a quiet win, a moment of peace in the midst of the storm.
But even with these changes, there is still so much at stake. Please continue to pray for Jaxen. One of the biggest concerns right now is ensuring that his blood gases remain stable. As his body fights, it’s crucial that his blood pressure stays steady. When Jaxen gets worked up, even just a little, it can cause dangerous fluctuations in his blood pressure. These swings often trigger arrhythmias, making the situation even more complicated. We are praying for a sense of calm to wash over him—peace for his little body, which has already been through so much.
It’s moments like these that remind us how precious life is, and how fragile it can be. Jaxen, despite his struggles, continues to fight with everything he has. His little body is strong, but it is also weary. The battle he faces each day takes its toll. But he’s not alone in this fight. His family, his medical team, and all of us who have been following his journey stand beside him, willing him on, hoping for a breakthrough.
As we pray, we ask for healing from the infections that threaten his recovery. We pray that every decision made today—every change, every small adjustment—will lead Jaxen to steady progress. We pray that he continues to remain calm, that his body doesn’t go into overdrive, and that the medical team’s efforts bring the results they so desperately need.