The worst week of our lives started mundanely enough: Theo was unwell at home one day, fighting for his life the next. We now know that he’s going to be okay, but the journey to that knowledge has been hell on earth.
This is every bit as horrific as you’d imagine. Every bit.
Between Sunday afternoon and 2am Tuesday, Theo was transferred to three different hospitals, ultimately ending up in the Intensive Care Unit of Queensland Children’s Hospital. Since Sunday he’s endured multiple canulas including a femoral line, a catheter, a nasal feeding tube (briefly), oxygen and, periodically, ventilation; steroids, antibiotics, multiple blood tests and three procedures involving Ketamine including a kidney biopsy.
Poor Theo. Poor me, Johnno and everyone who loves Theo.
Before all this, Theo had a week off school with bad cold symptoms, there was ‘alot going round’. But where his mates had recovered, he refused to come good. He started vomiting on Sunday, so Johnno took him to Byron Emergency, where a urine test revealed his kidneys were struggling. Johnno was instructed to take Theo to the brand new Tweed hospital, where he was admitted into a bed in Emergency.
It took some time for the gravity of the situation to unfold. The plan was for Johnno to stay with Theo overnight Sunday, while I’d come along in the morning with a bag for Theo in case he needed to be admitted. It was a restless night for me at home, I think the worst night of my life. At the time! My ignorance made me blind to what lay ahead. But whilst packing Theo’s bag, I started to suspect I was about to freefall out of real life and into an alternate reality. I was right.
Side note: the contents of that bag didn’t get used and when I unpacked it again, I thought ‘What fuckwit packed this?’ Kids with femoral lines can’t wear undies or pyjama bottoms. Kids with lines out of both hands cannot play the Nintendo. Like I say, ignorant.
On the Monday morning, Amy resolved to skip school and come with me. “I’ll be fine!” I said. “You won’t.” she responded. She was right.
Amy and I arrived at Tweed to find Theo conscious but weak, with a display monitor showing abnormal heart rate/blood pressure/oxygen saturation stats. An exhausted-looking Johnno was in a hard plastic chair, holding Theo’s hand. The moment I saw them, my ears started ringing and I crouched down to stop passing out. I heard Amy say “she needs to sit down. I’ll get her some water.” Next, she told Johnno to go and get some sleep in the back of the van. “You’ve had no sleep at all?!” she asked. He responded “It took them two hours to get me this chair.”
It turns out my Sunday night at home was a picnic compared to the same night at Tweed emergency. Quite aside from him being seriously unwell, alongside Theo was a man who’d been handcuffed to his bed and had two cops escorting him. The bed on the other side had a woman experiencing major psychosis. Theo seemed unphased, but the medical staff were beside themselves.
While Johnno slept in the carpark, Amy and I took up the vigil. Around lunchtime we were told “We don’t have the resources* to take care of Theo, he needs to transfer to Gold Coast Hospital.”
“Will I take him there?” I asked.
“No. We will, in an ambulance. It’ll be lights and sirens all the way.”
That’s when I descended, Inception-style, through more levels of suffering. It’s turned out what I thought was the worst night of my life wasn’t even in the top three.
The ultimate diagnosis, which took four agonising, gut churning days, is ‘post strep GN’. It’s the best news possible, with full recovery expected. It’s still a long road; he’ll have several sessions of kidney dialysis, a process that takes four hours each time during which he will remain in hospital. He still needs oxygen and the catheter, and isn’t up to standing/walking quite yet.
I will share some more about the experience soon.
* Tweed Hospital opened less than a month ago, and cost $724 million, but not enough resources? In fairness, this and the ‘sick kid between crazy adults’ is my sole criticism of the Aussie health care system, which otherwise provided outstanding, world-class, life-saving care to my best boy.