19/04/2025
An Update on Our Sweet Jackson
Rayna has been quiet the last couple of weeks but wanted to take a moment to share what’s been going on behind the scenes with her warrior boy.
Post-surgery, Jackson was doing incredibly well—eating, drinking, smiling, and clapping. We were so hopeful. But shortly after, a medication was administered in a way it should not have been via G-tube—and it triggered a cascade of complications that we’re still trying to untangle.
Since then, Jackson’s ammonia levels have been dangerously unstable—spiking as high as 105 (normal is in the 40s) and then dropping without warning. It’s been a rollercoaster of extreme lethargy, vomiting, and concerning metabolic shifts. At one point, two neurologists came running to inform us that he was at risk of needing intubation and a PICU transfer.
This is day 15 in the hospital. What was meant to be a step forward—managing seizures and easing medication delivery with a G-tube—has instead turned into a daily struggle to stabilize his system. His medical team is doing their best, but communication has been inconsistent, and at times, it feels like our questions are being met with more defensiveness than transparency.
Rayna hadn’t planned to share this publicly. But the weight of it all—watching Jackson go from his happy post-op self to long stretches of exhaustion and discomfort—has been heavy. And her sweet boy deserves to have his story heard.
This hospital has been their medical home for 13 years. They need it to feel like home again—safe, collaborative and focused on healing.
Please keep Jackson in your thoughts and prayers as we continue fighting to get him back to himself. We’re so grateful for all the love and support—we feel it deeply, and we love you all right back.
With gratitude
GoFundMe link:
https://www.gofundme.com/f/hope-for-jackson-rayna-jacksons-medical-expenses