Tag: hydrocephalus

Brain Surgery, Video Games, and Hawaii. Yup, They’re Connected.

Brain Surgery, Video Games, and Hawaii. Yup, They’re Connected.

I feel like I should start this post like one of Sophia’s famous stories about Sicily on “The Golden Girls.”

Picture it: Orlando, Florida, August 2022. I was sweating my ass off in the humidity of a hot summer afternoon when my kid said, “Mom, I have a headache”. We stood in the middle of Toy Story Land at Walt Disney World, arguably one of the hottest places in Hollywood Studios. Between the heat and the stimulation of thousands of tourists (even post COVID!), a headache isn’t improbable.

But for my kiddo with hydrocephalus, that headache was a sinister prelude to the second worst four months of our lives.

Not The Rollercoaster We Wanted

writerlesleydonaldson.com

Torran’s first venticuloperitoneal shunt was inserted on the day he was supposed to have been born. His premature birth three months early caused trauma in his brain resulting in two intraventricular brain bleeds, a Grade 3 and a Grade 4. The latter of these has recently been “reclassified” by researchers as a type of stroke because it’s an intraparenchymal hemorrhage. The blood broke down his brain tissue, itself.

After the bleeding stopped, the blood clotted and blocked the normal drainage of cerebral-spinal fluid (CSF), or hydrocephalus. A tube, called a shunt, prevents this build up. The CSF reservoirs (ventricles) on the inside of his brain now swell up if when the VP shunt blocks. In the past, blockages caused him headache, nausea and vomiting, and malaise. Other neurological symptoms can occur, too. Until recently, these showed up late in him.

Always An Unexpected Surgery

Instead of boarding the Disney Wish in its inaugural season, we headed to Orlando’s Arnold Palmer Children’s Hospital. They took fantastic care of him. On his first admission, they tapped the shunt and relieved the pressure. Presumably, he’d improved and they released us to the hotel. By the next morning, he relapsed and needed immediate emergency brain surgery. Turned out that blood blocked his shunt, something the surgeon had never seen in an old shunt like Torran’s.

What caused this bleeding in his head? No one knows. At first they said it could have been roller coasters, but then, six weeks later, it blocked with blood again! This time, there was no roller coaster in sight. He had his next revision with his wonderful team at Sick Kids Hospital. Sadly, this fixed shunt then got infected, resulting in 3 weeks of horribly painful antibiotics (until the PICC line was put in – finally!). For over two of those weeks, Torran’s shunt was externalized, “tethering” him to a pole in the hospital. He wasn’t allowed to move or even sit up without nursing supervision.

From Gloom To Glimmer

During this time, the gloom hit us hard. Torran missed about a third of his first year of high school. Bruce and I more than reached the bottom of the proverbial suck-barrel.

In November, I started a full time contract for the indie game studio, 5TH Cell, on a procedurally-generated narrative. Then Christmas and New Year came and went without a return to the hospital. Finally, my wee family had a glimmer of hope for a better 2023!

We faced other issues during this time, but writing and Torran’s steadily improving health helped buffer my spirits. We inched forward toward a special holiday keeping everything we had two of crossed. If Torran’s shunt failed mid-flight, it might spell disaster.

March 2023: All Hawaii, No Hospital

I’ve wanted to go to Hawaii all my life. I blame the old TVs that eventually wound up doing an episode in Hawaii when they became successful. Oh, and “Fantasy Island” and “Magnum P.I.

With every type of insurance and safety plan in place, we escaped our reality and gave ourselves to the majesty of Hawaii. Torran forgave us for dragging him around an island without roller coasters. I worked remotely, often while we journeyed between outdoor adventures.

For two glorious weeks, our only stressful events revolved around which volcano to see and which poke to eat.

Home Again, Troubles Again

This time, they were different troubles. Mostly school-related, and sadly, still ongoing. But not brain surgery! There’s always a silver lining, right?

My other big news: I no longer work as an emergency nurse. I’m off for health reasons. However, I don’t know if I’ll return to bedside nursing. Ever.

That’s another long discussion for another day.

For today, I’m okay with being #kenough.

(Yes, I saw Barbie and yes I loved it).