Soraya’s Sleep Study & Tough Timing
We made it through the sleep study!
We had all of our pregame tools in full effect – a custom picture book, Leena home to comfort Soraya, prep with Hospice Child Life, Macey & Katie to make her room feel welcoming, a service dog...
While Soraya felt brave going into the hospital with Safi, the rest of us were weary. The feeling of Soraya being gone was a bit haunting. She’s been in the hospital overnight multiple times, but this felt different. It was hard to walk past her quiet room with no vent alarms going off, no bedtime meds to give. Maybe it was harder because we know her breathing’s getting worse? Because this is the first time she’s in hospice AND away from the house?
From the hospital, Safi texted me, “I love her so much...she is so tolerant and so sweet. Everyone just loves her. She lights up the room for all....these things make my heart hurt. Wish so much that she didn’t have to do all this...” 💔
The timing is hard to swallow. Almost 3 years ago to the date (1/29/21) was when she had a sleep study after I noticed her chest wall muscles weren’t moving. That study literally marked the beginning of her decline. We knew from it that she would need a nighttime ventilator and I constantly thought about how fast she’d need more support.
I remember I’d begged our pediatrician for an example of what happens if a child needs a BiPAP ventilator and continues to get weaker. Of course, they responded, “They’ll need more time on the vent.” So I continued to probe – how fast will they need the extra support? They gave me two examples: one patient who needed to progress to more time on the vent every 3 years, and one every 10 years.
Here we are 3 years later, light years past our 2 hypothetical patients. Soraya needs her ventilator more hours of the day than not, and we already discussed getting a trach. We are already in hospice. It’s a slap of reality that I begged for 3 years ago and it’s actually even worse than I imagined.
Despite the complicated anger and sadness, I just wanted to hug her as much as she would allow today. Our great friend Alison brought her a latte this morning and it made her smile.
It’s so good to have her home. 🏠❤️