Soraya’s 3-Day Hospital Stay

While many were gearing up for back to school, we had one more big event before summer break ended: a 3-day hospital stay to determine whether Soraya has seizures. 

This became a concern of ours back in June after I had a sleepover in Soraya’s bed and noticed her legs and hands tightening/stiffening in the middle of the night. I didn’t know what I was witnessing but knew I couldn’t get her muscles to relax and that it was concerning, so I reached out to Soraya’s medical team. They agreed we needed to evaluate further, which led to them ordering a 3-day EEG.

Soraya was in the hospital August 9th through 12th. While she’s been admitted many times before, this was her first time in the TCC (transitional care center), a unit for ventilator-dependent patients and many long-term care patients. There were so many monitors that it felt like a step-down ICU.

During her stay, the EEG did catch the muscle spasm events….all it took was me staying up all night to feel when her muscles tightened and then pushing the event button next to Soraya’s bed. 

The events were closely tracked over the course of her stay and the EEG was reviewed. The results showed the events are NOT seizures!

The movements are called sleep myoclonus (sleep movements). They are hereditary and benign but the contractions are way more pronounced in Soraya and wear out her muscles. This makes the pain in her muscles worse…AND we found out her oxygen drops during them.

Where do we go from here?

Soraya will be taking a new med before bed to lessen the intensity of the movements from being so strong.

We’ll be monitoring her oxygen levels overnight with a pulse ox.

If her pulse ox numbers don’t improve, we’ll add supplemental oxygen. Needing not just the ventilator but oxygen as well would signify that her disease is worsening 😢

One step at a time…