March 4th

It’s always a ride with these boys. When things often get calm, there is always another bump, loop or turn. We’re keeping the doctors on their toes, digging back into the textbooks and collaborating with the team at Lurie’s.

Let’s start with Declan, since he’s been more stable and semi status quo.

Declan had his drain tube removed from his belly yesterday and he looks so good. He’s finally getting to try new positions and spend time on his sides, he especially loves facing his brother. He’s starting to fight his tube a little (nothing wild, just our bossy little buddy showing personality).

They’re working on adding additional medications to help him get more nutrients. He can’t live off IVs forever, but he also isn’t able to eat yet because of his belly. The goal is simple: rest, grow, and stay stable so surgery can happen in a few more weeks, the longer we can wait, the better. Overall, he just needs to keep resting and growing.

Now for Colton — this one is a bit heavier.

Colton had a tougher day. He needed a new oxygen tube and was intubated again today. They had to apply a little pressure because the tube was slightly big for him, but we’re hopeful this will truly help his breathing and give him the support he needs.

There’s also ongoing concern about his PDA. Today’s X-ray showed it’s still very large, which is scary to hear. Unfortunately, there isn’t much they can do about it right now while he’s still fighting infection and finishing antibiotics. We’re praying the antibiotics not only clear the infection but help calm the PDA as well.

He’s battling a staph infection in his blood that caused the bump on his wrist. The culture matches the infection from last week. An ultrasound of his wrist came back inconclusive, so they want to do an MRI. That means taking him downstairs and out of his room, so we’re waiting until tomorrow since he was just re-intubated today. They need to rule out infection in the bone. If it has spread there, the surgical team will need to step in with a plan to prevent it from affecting other bones as he grows.

We need all the prayers. This is still such a long journey. With all the medications, breathing support, and interrupted rest, recovery is going to take time.

These boys keep us on our toes. When it’s not one thing, it’s another. But they are fighters… they will keep fighting. We have faith in them.