Soraya’s Upcoming Sleep Study

Big news – Soraya’s sleep study got moved up!

We’ve had to make numerous changes to Soraya’s ventilator to help her breathe better over the past few months. With more changes than anticipated, Soraya’s pulmonologist recommended a sleep study to get a better idea of what’s going on. These take FOREVER to get into (about 9 months). Soraya was scheduled in April and got in for THIS MONDAY!!!!

Safi and I were excited...until we realized all the feelings it brings up 😥

We remember how it was her January 2021 sleep study that told us she was hyperventilating and actually needed a BiPAP machine (we’d had numerous before then to monitor her sleep but never had issues with her breathing). This upcoming sleep study feels like a stark reminder that we now need her ventilator so much more in the span of 3 years.

There are the feelings it brings up for Leena and Yasmeen. The knowing that a parent and Soraya will be staying overnight at the hospital. The reminder that the house will feel different that night. The witnessing of the tense preparation that goes into any hospital stay…

And then Soraya gets SO NERVOUS with sleep studies. Always has, always will. We prepare by contacting our favorite Child Life specialist from the hospital, who makes a picture book with every step of the study so she can know what to expect. Even though she’s done this numerous times before, the visuals help with her anxiety. Then, when we are AT the hospital, we contact Child Life to sit with Soraya and distract her with toys – or this time hopefully a service dog! 🦮

We typically give Soraya a BIG gift during her sleep study to help keep her motivated to keep going. This time she wanted a “shopping party” (vs shopping trip) with her sisters and 3 babysitters. And off to Ulta they went 😉

Every morning, Soraya wakes up and says, “Is it sleep study day? I’m really nervous.”

I think oftentimes people think if you have done something a million times it’s not hard or scary anymore. I will say every procedure, every test, every hospitalization – while familiar – STILL brings up a ton of feelings and fears.

Is there anything you have done a million times but is still just as scary?