I'm here as Sultan of Storage, but my most important title is Rad Dad.
I woke up this morning wanting to tell a story about my boy, Will, cuz I'm really REALLY proud of him.
Dubs is now a thriving 3 yr-old but he had a rough start.
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Rewind to Sep 2018 in London (where we lived). Sultaness was 6 months pregnant. Water broke at 2am.
4 yo daughter asleep. Called Uber. Driver named Yonus drove my wife alone to Chelsea & Westminster Hospital, calming her the whole way. (Someone help me find Yonus to thank him!)
Day 3: Something isn't right.
Docs tell us Will has sepsis (blood infection). Worse, it's E Coli, which often crosses the blood-brain barrier.
Spinal tap confirms it crossed - meningitis. Docs tell us the stats. 25% death, 50% cognitive defects.
Deepest of darkness.
Week 5: NHS docs and nurses are incredible. We owe them so much.
4 weeks of hardcore antibiotics and Will is infection-free. He's well enough to be transferred closer to home at Queen Charlotte Hospital.
Mom gets him nursing. Milk muscles!
That last photo taken Friday night. Saturday morning Mom and I both miss calls from hospital. Can't be good.
Will took a turn overnight. He's sick and they're not sure why.
Another spinal tap confirms meningitis is back.
Darkness again.
Docs are confused. We're confused.
Those stats again.
Time for full firepower antibiotics for 8-weeks this time. Bugs be decimated.
Will responds well and gets back on track.
Week 9: Will is crushing it. Meningitis is gone. But what did it leave in its wake?
Docs take regular measurements of his brain and head.
Something's wrong. His ventricles (where fluid collects in brain) and head circumference are growing too fast.
Hydrocephalus.
Week 10: Will is transferred to Great Ormand Street Hospital under care of neurosurgeons.
Spinal fluid isn't draining. They need to drill a small hole in his skull and insert a shunt to drain fluid into his abdomen. NDB.
Will's sister is psyched with this new hospital tho.
Surgery is successful!
Will now has a nifty new valve in his head and a tube that runs under his skin down his neck, across his clavicle, and into his belly.
They coil extra tube in his abdomen so it extends as he grows. Good call!
GOSH is where really sick children go.
Our time there was moving. Made us realize that despite his challenges, we were so lucky to have Will as healthy as he was.
Walk the halls there and you can't help but feel grateful.
The doctors and nurses really are magicians.
Fast forward to today:
Will is a healthy, happy 3 year-old. He's a kind, silly, empathetic soul with an innate ability to make people smile.
He's smaller than 99% and clumsier than 100% of his peers.
Words and walking are hard for him but he's a perfect little boy.
Will is where he is only with the help of a badass team:
- His Mom, whose trauma will last forever
- His docs and nurses of the UK NHS (our superheroes)
- Yonus the Uber driver
- and our friends & fam who did anything they could to help while we were an ocean away
There too many lessons to take from our experience, but a few stand out:
- Life can change in a moment, be grateful for what you have and cherish the present
- You can endure more than you think
- Kids are strong as f_ck