The Nightmare Scenario

Sorry I haven’t posted in a while. It’s been a busy week – that tends to happen when you discover that your kid is a diabetic.

The doctor was adamant that diabetes didn’t need to be a nightmare, and that Ginger can live a long, healthy life and do anything she wants to do. I nodded politely and thanked him for his reassurance, but I added a silent, “As long as she has access to insulin.”

I started a long post about this, with all the gory details – the ambulance rides, the ER, pediatric ICU (pro tip: if you ever have occasion to be in a PICU, keep your eyes fixed forward and do not look into the rooms unless you have a heart of stone. You have been warned.) But I decided that it would end up TL; DR, so I came up with a more concise version. I still think some of the details are important, in that they may help someone recognize the symptoms and possibly avoid the horror show we watched. And of course, there are HUGE prepping implications; for a guy who works so hard to free himself from the systems of support, this is quite a challenge.

In hindsight, it all started about a year ago. Our then seven-year-old daughter, who we shall call “Ginger,” started losing weight. We weren’t too concerned, because she had some to lose, and it was pretty gradual. We figured more exercise and eliminating juice from her diet was having the desired effect. What we didn’t know, or didn’t bother to see, was that she was also peeing more and drinking water like crazy. Kids that age are a little more private about their bodily functions, true, but I still should have noticed.

What was going on her her body was that her immune system, stimulated by some sort of challenge – possibly by the flu outbreak late last winter; the timing is just about right – started attacking the insulin-producing beta cells in her pancreas. Insulin allows glucose to move from the blood to the cells for use as fuel, but as her insulin levels headed down, glucose became stranded in her blood. Eventually is started being excreted in her urine, and her kidneys ramped up the volume of urine to dilute the sugar. Starved for fuel, she started eating like crazy – another classic symptom that we missed – but the glucose just passed on through.

She lost more and more weight over the summer and fall – eventually she lost more than 30 pounds. Yeah, I know – how did we miss that? Normalcy bias; we didn’t see what we didn’t want to see. Besides, she seemed healthy and happy, and she was still getting taller. What was going on behind the scenes was her metabolism switching over to starvation mode. Not seeing any glucose available, her cells started screaming for food. Her system assumed she was starving, which is a very real sense she was, and started marshaling the cellular resources to use fat as fuel. That’s what was keeping her alive for the last year or so. Unfortunately, burning fats results in ketones being released, and these small organic molecules are toxic. So as she was slowly being poisoned too.

Guess I shouldn’t clear space on the mantle for that “Father of the Year” award.

About two weeks ago, she really started going downhill. Tired, listless, cold, and almost skeletally thin. We called the pediatrician for an appointment, but Ginger beat us to it. She started vomiting on Thursday night, and by Friday morning, she was nearly unresponsive. She had this peculiar labored breathing too – Kusmaul respirations, I now know, which was her body’s last ditch effort to blow off carbon dioxide in an attempt to reduce the acidity of her blood. She was in full-blown diabetic ketoacidosis by this point. And I missed it, even after having seen it dozens of times as an EMT on the street. To be fair, I’d never watched it happen from this side of the fence. I’d always only seen it once it became an emergency. And that’s what we had on our hands early Friday morning.

I called 911, woke up the older kids, and called the grandparents. The big kids really stepped up – roused from sound sleep, told their sister was sick enough to need an ambulance, and still they performed flawlessly. My daughter unlocked the driveway gate, and my son walked the 800′ out to the road to flag down the medics. How he managed that nearly quarter mile walk in the pitch black of a 5° predawn, alone with his thoughts and unsure of what was happening back at the house, I’ll never know. My daughter was a dervish of productive activity too – getting stuff together for us, clearing the way to get her into the ambulance, containing the animals, and eventually holding things together until (and while) my parents were her. She ran the show for us, and I can’t express how proud I am of her and her brother. They just stepped up. Awesome kids.

We got to the local ER, and Ginger’s blood glucose was in the mid 400s – normal is 70-140. That’s where we finally learned that she was a type 1 diabetic, and would now be insulin dependent for the rest of her life. To their great credit, the ER docs didn’t do anything but stabilize her – she was wickedly dehydrated – and arrange transport to Connecticut Children’s Medical Center in Hartford. Outstanding care – they even sent a special ambulance with a nurse and doctor. She stayed in pediatric ICU for a day and a half, getting her fluids balanced out, and she started getting the first doses of insulin needed to get her sugar back to normal levels.

The contrast between the kid that went into the hospital and the kid that came out was stunning. We didn’t realize how gray and lethargic she had become. True, she’s a redhead and has that porcelain skin, but we still should have pulled the trigger on this a lot sooner. But the thing that really should have motivated me was the lack of spark we were seeing – there was no Ginger there for a couple of weeks. A few wan smiles, a few forced jokes, but mostly sitting and staring glassily off into space, or falling asleep on the couch near the fire in the middle of the day. More normalcy bias – we figured it was a cold, or cabin fever, or anything to explain away the changes we were seeing.

We spent the weekend in the hospital, and then had an intensive day of training on diabetes management. We learned about her new diet – not too far off of her old diet, thankfully – how to give insulin, how to measure blood glucose, and how to handle emergencies. Then off we went with our much happier and healthier daughter to learn the “new normal.”

At one point in the PICU, one of the endocrinologists was talking to me, and I shared that diabetes was my nightmare scenario. He was adamant that it didn’t need to be a nightmare, and that Ginger can live a long, healthy life and do anything she wants to do. I nodded politely and thanked him for his reassurance, but I added a silent, “As long as she has access to insulin.” Of course I had in mind the poor diabetic girl in the novel “One Second After,” which I recently reviewed on APB. In that review, I slammed the father of the girl for not having the wit to improvise refrigeration to keep his ill-gotten stash of extra insulin viable. Karma’s a bitch, eh?

So now that things have settled down, I’m starting to think of the prepping aspects to this. As I said to our endocrinology case worker, I won’t feel comfortable about this process until I know I have backups to my backups to my backups. She was cool with that, and immediately gave me two more glucose meters to go with the one the hospital had given to us. Good start. I also said I wanted to see at least a six month supply of insulin in my fridge at all times, and she said we could do that too. So at least I have some buy-in from the people writing the prescriptions. And I’m not settling for that – you can bet your ass that I’ll know how to isolate insulin old-school style, right from the pancreas of any suitable mammal I can find.

More on the prepping aspects to this in the weeks to come. For now, my Ginger is back, and I’m just going to enjoy that for a couple of days.

2 Comments

  1. Br0therH@rold

    Chin up, Brother. This is just another challenge to be solved – and it will be solved. I know it feels like a nightmare, but with the pervasiveness of diabetes, the tools, technology and information is out there. Believe me, I understand what it’s like to live with, and attempt to prep for, a condition that is a virtual death-sentence if the grid goes down. I believe Ginger’s diabetes is manageable, even if it goes sideways – and because you really are Dad of the Year, she will be just fine. You first prep project should be a way to keep insulin cold in the back of a ruck sack, should a 3-man fireteam need to go secure some… I call point.

    Reply
    1. APB

      Good thinking – need to lay in a supply of cooler gel packs. Maybe a hydration pack with an insulated pouch for the bladder would be a good idea too.

      Reply

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