The Test that Didn’t Go According to Plan

Today was one of those days where things did NOT go as expected 😭

During Soraya’s pulmonology appointment earlier this week, her doctor noted that the ventilator changes we’ve been making aren’t helping blow off her carbon dioxide and ordered a metabolic cart test to explore this more.

Despite being a pediatrician, I had never heard of this test. So I did what I always do after scheduling something where I don’t know what to expect – I contacted our trusted child life specialist! She immediately got in touch with the pulmonary team and created a visual book of what to expect to help us prepare for the test on Friday (today!).

This book was SO helpful as it helped Soraya understand what was expected of her and allowed us to discuss what would be the hardest part ahead of time. She was so nervous about having to lie flat as it’s hard for her to breathe in that position. Because of child life’s help, we were able to address this and ask her doctor if she could be propped up instead.

Today, we were READY...but there were more than a few challenges this morning.

First, the elevator closest to our accessible parking was broken. So we had to walk around the building. Next...the machine to do the test was not cooperating. So we waited... and waited some more...did I mention Soraya had to be fasting for this? As the anticipation built and the tech came to tell us we’d have to reschedule...Soraya sobbed. 

She cried because she wouldn’t have more information today that could help her. She cried because she felt dizzy and weak all of the time. She cried because she would have to come back after getting here and going through all this. She cried because she was hungry. And I was at my capacity for holding it together...so I sobbed with her. 

We both spent time cheering up one another after and talked about the good that came out of the morning: dedicated time together, a nice walk outside, and singing our hearts out in the van. 

The test is rescheduled for next week. Despite the unexpected, there’s one thing we are certain of – thanks to child life, we WILL be ready again!