Our Family Motto: Expect the Unexpected

Having a child with a complex medical history and multiple concurrent diagnoses makes life…interesting… to say the least. No matter how much I stress about or plan for an appointment, Jax always surprises me.

Sometimes that’s a good thing.

Like last night when we arrived for Jax’s sleep study and he jumped in the chair and sat there for 15 minutes in a row while the technicians attached electrodes and sensors all over his body.

I was nervous about this appointment because Jax doesn’t like things on his face. I was worried he would get upset and not let them finish. I wrote a social story about what he could expect and we spent some time role-playing what would happen. And it totally worked.

This kid is seriously amazing. He just takes all the medical stuff in stride and says “It’s our job to help the doctors, mom. Then the hostable gets firetrucks!”

He didn’t know this, but I had a new firetruck waiting for him when the study was over.


Sleep studies are fascinating, actually. They can get so much information from the sensors. They gather data about work of breathing, apnea spells, sleep cycles, dream states, brain waves, you name it, there’s a sensor for it! Hopefully this data will help his specialists learn more about his sleep patterns and find out if he needs his adenoids or tonsils out.

Unfortunately, there was another unexpected turn of events last night.

Jax ended up getting really sick right around midnight. He spiked a fever, developed a very deep and chesty cough, and said he had a stomachache. We tried to rally, but he was not settling and he was getting worse by the second.

We all know Jax’s M.O. is to be totally fine and then totally NOT fine, right?

His oxygen levels started dipping and he wasn’t able to stop coughing.

They had to stop the sleep study, which was a bummer. They need at least 6 hours of data and we only got 3 hours. I’m keeping hope that they got enough information and that we don’t have to repeat the study again.

We went across the street to the ER. It was the last thing I wanted to do. I was already tired, Jax was miserable. But, I didn’t want to drive an hour home and then have to turn right around again in case I could not control his asthma symptoms at home.

It was the right choice. An X-ray showed “cloudiness” which could be an indicator that the pneumonia from a couple of weeks ago did not clear. Or it could be that he’s developing yet another pneumonia infection. Either way, he was admitted for observation.

We finally got to sleep at 4am. I slept for a couple of hours and Jax got a few more in than me. He did ok through the night, so we’re home now.We’re both really tired today, and Jax is raging from the steroids. 

Expect the unexpected? Ok, fine. But I need a nap!

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.

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