Expect the Unexpected: Part 2

I’ve gotten a lot better at rolling with the punches since Jax was born. But I still don’t really like it much.

Jax was supposed to have surgery tomorrow and an MRI of his brain tumor, but since he’s still sick and having significant respiratory issues, we had to cancel.

We had the pre-op appointment with his pulmonologist today. I knew she would be the person to give the final say and I trust her. Jax’s oxygen level was only at 94 during the appointment, which is much lower than his usual 99. She said his lungs were still too twitchy to risk a 4 hour intubatuon. If we did go forward with anesthesia, he’d most likely get post-op pneumonia and need to be admitted.

It’s not worth it. But I’m still disappointed. 😦

A lot goes into these big appointments.

We have to coordinate the:

  • pre-op appointment
  • urology surgeon
  • operating room
  • radiologist
  • MRI machine
  • oncology follow-up appointment
  • urology follow-up appointment

Plus, we have to:

  • take time off of work for surgery
  • take time off for recovery (Jax can’t go to school or daycare for 2 weeks after the surgery because he gets a catheter.)


  • plan for activities to keep Jax occupied while he’s healing
  • write a social story about the surgery day so Jax knows what to expect
  • make a picture schedule to help Jax the day of surgery
  • coordinate with his teachers, therapists, daycare provider, and bus driver so they know about Jax’s recovery / time off

So, there’s plenty of logistical crap that needs to happen, but I can handle all of that. Thankfully, I am a decent planner and I can usually keep all of these balls in the air.

What’s hard for me us the anxiety that surrounds surgery and scans. (I’ll remind you that this is a hypospadias repair surgery and not brain surgery! Imagine the wreck I would be if he needed brain surgery!)

I use up a lot of energy keeping my anxiety in check. I worry about how recovery will go for Jax – it hurts my heart to see him in pain. I worry about having to take two weeks off of work and managing my pottery orders and freelance projects during recovery. I worry that the tumor will have grown (I can’t even go there.).

Now I just have to wait until April to do it all over again. Sigh.

I know postponing the surgery is the best thing for Jax. I wouldn’t do anything to put him in danger! I told the pulmonologist “I’m hearing you, but I just don’t want to be hearing you!”

I wish Jax was healthy. I wish his lungs weren’t so scary weak. I wish he didn’t need anymore surgeries. I wish oncology was not a part of our team. I’m just waiting for the day when we can “settle in” with our lives. I feel like all of these illnesses and hospital stays really set us back.

At least it’s going to be a nice weekend with temperatures in the 50’s. So we’ll get outside and enjoy the sunshine. There’s that.

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.

2 thoughts on “Expect the Unexpected: Part 2”

  1. Still raising medically complicated kids and writing this from my own hospital bed. I get it. My youngest has had 17 surgeries varying in complexity and length. I’m always watching for what’s next. For many it does slow down and others it just changes.


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