Still Here

Jax needed oxygen last night, so we’re still here. At the lovely hospital that is so familiar, it feels sort of comfortable. Jax knows what he needs to do to help the nurses and doctors and jumps right up on the bed and holds up his arm for his “arm hug” (blood pressure) and his pointer finger to “check his numbers” (pulse oximeter). It’s great and sad at the same time.

He’s such a trooper – making everyone laugh with his jokes and funny dances. He’s climbing the counters, hiding in the closets, and generally being his curious, active self. Everyone who comes in the room says some version of “wow – you really have your hands full!” I just tell them “He’s a great kid! But this is what happens when you trap a kid with ADHD in a room for 4 days.”

He’s doing much better today with his oxygen needs. We’re doing nebs every hour now to try and help him over this hump. He might have turned the corner! We hope he won’t need oxygen tonight while he’s sleeping, but Jax dances to the beat of a different drum and has stumped his doctors and respiratory therapists before, so we’re trying not to get our hopes up too much.

If he needs oxygen tonight,  then we have to stay tomorrow night too.

Child Life and the volunteers have been in a lot today so that’s been fun. They bring new toys and since Jax is sick of playing with me, he jumps at the chance to talk to anyone else besides me.

This made me laugh: today Jax ordered “sko-betty and marbles” (spaghetti and meatballs) for lunch.

He misses his toys and wants to go home. Hopefully that happens tomorrow!

Author: Andrea M

Oh man, what an adventure! I went into labor unexpectedly when I was 23w3d pregnant. Jaxson was born weighing 1 lb 8 oz. A tiny little peanut, but boy was he feisty. He still is! We love it now, but we probably won't when he is a teenager. I write about our journey and all other things that come with it, including a brain tumor. We look forward to "meeting" you - come hang out with us...we're pretty cool. View all posts by Andrea M