Coordinating Care for a Child with Extra Medical Needs: A Real Life Example

Jax has specialists at four different hospitals.

I am thankful that we live in an area that offers a choice, but it makes coordinating care difficult!

For example, I’ve been trying to schedule Jax’s 2nd phase hypospadias repair. We’ve know since the last surgery that it would happen this fall. Jax’s urologist is at St Paul Children’s.

We also have the follow-up brain MRI to check for changes in Jax’s JPA brain tumor. Jax’s neurosurgeon is at Gillette’s and his neuro-oncologist is at Amplatz.

It’s a priority for us to schedule both the surgery and the MRI at one time so Jax only has to go under anesthesia once this fall.

Want to try your hand at coordinating all of the following pieces in this puzzle?

  • Operating room
  • Surgeon (for the hypospadias repair)
  • MRI machine
  • MRI technician
  • Anesthesiologists
  • Transfer of medical records to the neurosurgeon and neuro-oncologist for review
  • Pre-op appointment with pediatrician
  • Post-op appointment with urologist / surgeon
  • Post-MRI follow-up appointment with neurosurgeon and neuro-oncologist
  • Insurance

So far, I’ve spent six hours on the phone fitting all the pieces together. With the help of a very crafty surgery scheduler and the nurses at Children’s, Gillette’s, Amplatz, and the pediatrician, we found a date that works for everyone!

Surgery and the brain MRI will be on September 19 at St Paul Children’s.

This is technically a full month earlier than planned for the MRI, but the only other available date that worked for everyone was November 20 – a full month and a half later than planned. We chose to go for the early date, because waiting just seemed silly. I mean, what if we find that the tumor is growing?!

I couldn’t get a follow-up appointment with the neurosurgeon until September 30. That’s too long to wait for the results, so I’m trying to get a hold of his nurse to see if he can sneak us on the schedule sooner. I’m hoping that the neurosurgeon will call us while Jax is still in surgery and go over the preliminary results with us that day! That way, we won’t worry all weekend about the “what-ifs.”

I never knew my background in event planning would come in so handy.

Jax still somehow finds time to stop and smell the flowers…and for that I am thankful because it reminds me to take a step back from the details and the stress and worry and remember that I am doing all of this for Jax and he is worth it! (But, I could still use a spa day after this week! 😉 )

stop and smell the flowers

 

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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.

4 thoughts on “Coordinating Care for a Child with Extra Medical Needs: A Real Life Example”

  1. So glad you share things like this! Things have calmed down for us in this arena, but I should have shared while it was happening. I’m also super glad that you were able to coordinate everything for Jax’s surgery. We will be thinking of you!

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    1. So glad you are out of the woods with all this crap! I thought I would share just in case there were other parents out there who are about ready to tear their hair out! 🙂

      Like

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