Post-Infusion Update: Brain Infusion #159

Brain infusion #159 has officially come and gone… and it came with a bang none of us expected.The night before, my mind was a complete wreck. I got all the pre-infusion prep done, but my brain wouldn’t shut off: Should I pack extra? What if Malachi feels horrible? Should I prepare for an overnight? Should I bring everything “just in case”?We’ve only been home 7 days after 23 away, and between unpacking, organizing, cooking, settling Malachi back in, and anticipating every possible need—both of us were stuck in this cycle of Functioning exhaustion/anxiety/ depression. Friday morning we headed out early, greeted by a little Disneyland-style holiday lights surprise that Reiff had finished the night before. Even at 5:45am it brought us a moment of joy before we hit the road to Seattle.The team was SO happy to see us, especially Malachi. They’d been there when everything spiraled weeks earlier, and some hadn’t even known he ended up with more surgeries than expected. You could feel the collective hope and concern in the room as we prepped for infusions. Malachi shared his worries and the team listened with real compassion.Infusions started smoothly. Malachi fell asleep quickly; Maleea stayed more alert this time. I even managed to connect with a friend I’ve known since I was 18—her daughter was inpatient for heart surgery. A beautiful reunion after a decade. Missed my other girl Erin & Brayveee- Brayden by minutes, but grateful for even one moment of connection during these long medical days.Back in the infusion room, things shifted quickly. Maleea was drifting off, and we woke Malachi for his IV placement. I realized he hadn’t eaten all day. Within minutes, intense head pressure slammed him—he couldn’t lift his head, and the pain hit fast, neausa, tremors increased to different locations, and his head even endured tremors.My stomach dropped. Not again.The team rushed in. Neurosurgery was called. Things were escalating. Suddenly it was:Pack everything. Keep the infusion connected but stop the flush. Go. Emergency CT now.Reiff stayed with Maleea. I went with Malachi this time.The ER was ready, but the most terrifying part was hearing staff say:“We’ve never seen this machine before.”“Can we just push a flush through it with saline?”NO.This port goes directly into his brain. It’s still connected. This is Batten’s. This system is unique. And if the wrong thing is done, the consequences are catastrophic.I went into full protect-Malachi mode—educating, redirecting, explaining the infusion system, explaining the brain port and chest port connections, explaining what not to touch.Thank God for our Batten’s nurse, who advocated fiercely and emphasized that I am the expert in Malachi’s ports and infusions. The team listened. They understood. They worked WITH me.CT came back clear.Port flow was good.Bloodstream in his brain—clear.His system was functioning exactly as it should.We didn’t even need to restart the flush. Two team members tag-teamed a safe, sterile removal of his chest port access, and I could finally breathe again.We’ve learned he needs IV meds earlier in the process to help control brain inflammation—especially while he’s still recovering from multiple brain surgeries, chest and bloodstream infections, and the trauma his body just went through.We are beyond grateful.But the emotional toll… it’s real.Our guard is so high now. Our anxiety is so close to the surface. Once we were released, all we wanted was to go home.So that’s where we are—home.We have 12 days until the next infusion.Twelve days to rest, recover, and breathe. Christmas gifts, ideas, shopping holiday plans, & festivies is not on our priorty list, but just keeping our batten fighters thriving.It’s all we can do right now. 💛🙏

Thank you for the messages, encouragment, love, prayers, support, its all needed!!