This morning, Kaydes and I went to the lab for her blood test. Normally, these visits are a battlefield of squirming and tears, but I hoped it would go better after she watched me get one yesterday. This was her first proper blood draw from the inner elbow. Previously they had been finger pricks to check her neutropenia.
She’s always been a bit tricky to get a vein for IV’s during hospital visits, so I expected it might take a bit. They didn’t get it the first time, but the second attempt was smooth, and she handled it so well. Listening carefully and following instructions—like making a fist—she let out a few tears at the jab but didn’t fight it. For her efforts, she proudly walked away with a certificate, and we strolled down Lambton Quay with me telling her over and over what a great job she did and how proud I was!
Preparing for Surgery
Over the past year, Kaydes has had several ear infections, which led to a paediatric ENT appointment. After confirming she’d need bilateral grommets again and bilateral adenoidectomy, her surgery was scheduled for January 27th.
Since it had been a year since her last blood test, I was curious to see if she’d grown out of her neutropenia. First discovered in 2022, what had started as bronchiolitis and an ear infection turned into mastoiditis. Her neutrophil levels were shockingly low, dipping below 0.09. Not long after, she was somewhat diagnosed with viral-acquired benign severe chronic neutropenia. Along with reassurances that she’d likely grow out of it within the next couple of years.
Since no GP had mentioned it in a while, and we were preoccupied with the recurring ear infections, I presumed we were in the clear. After all, she’s growing up so well – happy, strong, kind, and intelligent.
Wanting to cover all bases before surgery, I took her to Awanui Labs to check how things were tracking. My main worry for the surgery was a previous big hiccup in the last one. Where she had a laryngospasm while she was under, and they had to bag her for over an hour due to not having a good line in! So for this upcoming surgery, I’m trying to make sure we have everything prepared and smooth out any wrinkles..
The Call That’s Shifted Things
When the phone rang, I leapt into the other room to answer it. It was her GP, who had just heard from the blood lab. She told me the numbers, but I didn’t really hear them.
It wasn’t until after the call, when I read the numbers I’d scribbled down—0.1—that panic started creeping in. A lot lower than I had ever expected. Thankfully, the GP managed to get us an urgent appointment for tomorrow, and at her request, I let the paediatrics team at the hospital know. I chatted with Mum, and she reassured me, but an old and unwanted friend, nausea has joined my side.
I really thought we’d be in a better place by now. I’d envisioned hearing that she didn’t have neutropenia with her numbers being something like 2.0. Instead, we’re still right where we started, and I can’t help but wonder what this means moving forward. Looking back, I regret not pushing for tests sooner. It’s so easy to assume things are fine when no one seems concerned.
Balancing Worry and Gratitude
The thing is, Kaydes is doing so well in every other way. She’s thriving, growing, and absolutely loving daycare. You wouldn’t guess her immune system isn’t quite where it should be by looking at her. And that’s what makes it so confusing. How do I balance feeling grateful for how amazing she’s doing, with the worry that part of her immune system isn’t keeping up?
Part of me wants to dive into full research mode, exploring every possibility and option. While another part just wants to focus on the fact that she’s happy and healthy in all the ways that count.
For now, I’m taking it one step at a time, reminding myself that I’m doing everything I can for her. And I’m finding comfort in the little things (read: carbs) – even when the numbers feel overwhelming.
*Since this post was published, the surgery was postponed due to her incredibly low neutrophil count, and the risk of complications and post op infections. We are waiting for the paediatric team at Wellington Hospital to get in touch with us, to know where we go from here.
Lore & Tempo is where motherhood meets adventure. I’m Ren – storyteller, explorer, and single mum in Wellington, New Zealand. I’ve been lucky enough to wander through 45 countries. 15 of them with my +1, Kaydes, either strapped to my front, on my hip, or running ahead on her own adventures. I created this space to share single parent life, travel tips, and the joy of exploring the world.
