Pressing pause

Saturday, January 25th, marks 31 days across two pediatric ICUs.

What started as a vicious cold has unlocked the potentially inevitable progression of Lexi’s neuro disorder- and has resulted in movement storms requiring heavy sedatives to keep her safe from herself during her episodes.

Since the day after Christmas, normal life has been put on pause so that we can focus all of our energy on Lexi. Some days have been great, and some have been tough. Some weeks have been great, and some have been tough. Despite 31 days of almost continuous respiratory support, trial and error with medications, any number of specialist consults, and sometimes having to knock her out completely, we’ve seen a lot of beauty through this fog of war.

Miraculously, our spirits are positive, even if our bodies are exhausted.

I could air the laundry list of honestly brutal developments and setbacks we’ve had along the way, but they all have been, and all will be, overcome.

Instead, I’ll share the beauty we’ve seen.

Our church, small group, friends, and neighbors wrapping themselves around us with prayer, food, good vibes, and Uber Eats credits.

Our amazing nurses staying late to ensure complete and thorough shift changes. Our doctors and specialists listening to us and reading the scant research I’ve compiled over the years. Our neuro team consulting with specialists around the country. Our respiratory therapists trying everything possible to keep her airways clean and clear. Hearing all of them mentioning the research and prayers they’re doing off the clock - because they care so much about our precious girl.

Our little community of GNAO1 parents who’ve reached out with encouragement and advocacy advice. Spending an hour talking to a father who watched his child spend 101 days in the ICU - and then sending me a knowledge bomb of research and studies detailing brain surgery and additional therapeutics to explore.

The willingness of another PICU to take on our daughter’s case - the speed of which (4 hours, from informal text to approval to vacancy to transport) was nothing short of a miracle. The care and precision of the emergency transport team working in the middle of the night to ensure Lexi stayed calm and safe.

Our neuro confirming that Lexi had remained seizure-free during her movement storms, despite the ER intake teams and ICU doctors flatly stating that they were classic seizure postures.

The beautiful moments shared between my wife and me as she juggles home duty with our eldest while I work from the ICU room and stay (mostly) vigilant at night. The laughter we shared when watching Nate Bargatze shows, to checking in on each other immediately after our church’s 6am morning prayer Zoom calls.

The bro in the hospital cafeteria who gives me the employee discount.

The conversations we’ve had with staff about our faith and grace through this season. The prayer I got to have with the mom five rooms away who was breaking down in the elevator. The quiet conversations with the night staff while we both watch over Lexi’s vitals.

My eldest daughter handling all of this just as best as she can, while patiently observing my wife and I handle all of this the best we can. For her, I know this is absolutely brutal. But I also know she will come out of this so much stronger.

I’m at peace. We are at peace. And it would be foolish to think it’s by our strength alone. This is God’s power at work. And we stand faithfully by to see His perfect plan unfold.

We have more mountains to climb, but I know we will summit them.

If you’re the praying type, please pray for a complete recovery for Lexi: with no regression in her abilities, nor progression of her movement disorder. She’ll be ok. We’ll be ok. By His grace alone.

So for now, I’ll keep an eye on emails and responding as I can. But DD will have to take a backseat until I can bring my little girl home.

God is good