March 22nd

It’s been a few days since we last updated on the boys. Overall, things had been very stable and calm. They were both resting comfortably, and it felt like a low-key, steady weekend, which was something we really needed.

Early Sunday morning, things picked up a bit.

Declan has had an increase in blood from his ostomy. The team is watching closely, but right now it’s unclear exactly where it’s coming from. They’re continuing to monitor and work through what could be causing it, especially given everything his belly has already been through.

Colton had a much tougher night. He had come off his pain medications, but he was clearly uncomfortable. On top of that, his breathing tube had shifted slightly, which really bothered him. His oxygen levels were struggling to stay up (stuck in the 80s), even with increased support. It was hard to watch.

The team stepped in quickly, and he’s now back on paralysis and sedation so his body can fully rest and not have to fight the ventilator. Since then, he’s been more stable again.

As we head into this week, it feels like an important one for both boys. We also have a new attending doctor coming on for the next two weeks, which always brings a fresh set of eyes and perspective. She is a GI specialist which is great for Declan!

For Colton, the big focus will be understanding what’s going on with his lungs and figuring out a safe plan to eventually start weaning him off the ventilator.

For Declan, the priority is getting more answers about his belly and the bleeding. whats causing it and what the next steps should be.

We’re hopeful for clarity this week. Both boys continue to be watched so closely, and we’re trusting the team as they guide us through these next decisions.

Thank you for continuing to pray, check in, and support our family, we feel it every single day.💙💙