Is Soraya Having Seizures?
A few weeks ago, Soraya asked me to have a sleepover. She goes to bed around 7pm, so I thought it’d be the perfect excuse to get caught up on my sleep.
Soraya had her ventilator on and since I sleep with a CPAP machine, I slept opposite direction from her. Of course with going to bed so early, I was wide awake at 3am. It was then I noticed tightening and stiffening of Soraya’s legs and hands. I didn’t know what I was witnessing but knew I couldn’t get her muscles to relax.
I fear this could be seizures, something Soraya has not had before and was last tested for 9 years ago. I reached out to Soraya’s medical team and they agreed we need to evaluate this further, so soon Soraya will be admitted to the hospital for a 3-day EEG.
The fear these are seizures has been really eating away at me and I was becoming frustrated with myself. I then realized I had certain ideas of how I “should” be feeling.
I want to share these, as maybe sharing will help others who care for someone with complex needs in case they can relate to these “should”s.
I kept thinking:
• Since Soraya has a long history of being ill, medical procedures, and uncertainty, nothing should scare me.
• Since she’s in hospice, why would I worry about any new symptoms when any result still leads to a progressive and life-limiting outcome?
• She’s had SO many hospitalizations so this should be no big deal.
The reality is:
• With ANY new symptom, I spiral (likely like other parents!!!) to all the what ifs?!
• I start asking everyone around me who knows about seizures about their experience (even though I am a doctor, I crowdsource too!)
• I google like crazy to find out as much as I can about seizures in Soraya’s age group
• Hospice doesn’t mean that I don’t care anymore. If she has seizures, we can treat them and that would help her quality of life, which is what hospice means to me.
• With every procedure/hospitalization, the anxiety does NOT get better – the logistics do, like knowing how to pack!
Even though we continue to go through hard things… we are still terrified every moment there’s a new symptom, procedure, or more uncertainty.
Parents of medically complex kids – can you relate?