The Night My Son Nearly Died for a Sprite
Editor’s Note: This was originally published on “Deceivingly Normal.”
But it almost did
I am carrying that
In every step
In every breath
I am having a difficult time
Figuring out how to handle the grief
Of an almost
My daughter Shai wrote that.
Like her, I too am having a difficult time.
He was 10 years old now after all, and the rule always was that when you were “double digits” you could have pop sometimes. Of course this was the general rule for all our kids, who we rarely allowed pop to anyway. But Jax has diabetes so the rule folds and wrinkles for him differently than it does for his siblings.
Yes, Jax could have pop now, but he still had to abide by the diabetes rules we had set upon him and “wait till he was low.” We thought this was a reasonable request, especially since he’ll likely get more pop in his entire lifetime from addressing low blood sugars than his younger brother Phineas ever will. We thought we didn’t have to explain further, this was just “the way it was” for Jax, didn’t he understand that he was just different? Perhaps he thought that with perfect blood sugar readings he was entitled to a treat. Perhaps I should have considered that a treat is okay every once and a while.
Wasn’t I the spokesperson for him and his disease, always touting that he was allowed to have anything he wanted as long as he gave himself insulin for it?
Perhaps I should have been teaching him all the ins and outs of diabetes instead of taking over the reigns and waiting till he was older to properly educate him? Why hadn’t I taught him about overdosing yet?
Perhaps I was afraid that this child, who already had to deal with so much on the daily, might be scared if faced with even more reality. The truth about his own mortality and how close to the edge this disease keeps him to it. Always.
His blood sugar readings had been perfect all day.
I mean perfect.
I’m surprised a tiny diabetes fairy didn’t appear to grant us a free wish – that’s how perfect his numbers were. And when he came in from playing hard at soccer and asked “can I have some of this Sprite?” I said: “no, wait till you go low”. And when he went to get a snack from the kitchen I said: “don’t give yourself any insulin for that snack, you’ve just played soccer and you’ll go low”.
In telling him why to avoid the Sprite I gave him the information required to get that Sprite. But in all these years I never gave him the information and the autonomy of his own disease needed to keep him safe.
I told him that giving himself insulin would make him go “low.” He wanted to go low now, of course, in order to attain that precious Sprite that sat in the fridge awaiting him. I didn’t ever tell him that insulin was as dangerous as it is life saving. I never thought I had to.
I gave my impulsive, often unthinking, 10 year old the tools for his own demise.
At bedtime Kevin had tested his blood sugar and was pleased to see a perfect number of 6.2mmols. Without extra technology like a CGM to inform us otherwise (like showing us two arrows pointed downwards that would alert to a dangerously fast lowering rate) we assumed Jax was alright, better than alright – perfect.
A mumble. That is all we heard, and barely at that. We would have ignored it if something inside us hadn’t said “better check it out.” Instincts I guess.
“Get down here and help me” Kev called up the stairs. His voice slightly panicked. I was immediately reminded of the night Jasper had a seizure when he was younger. There was a pause in my thoughts where my own panic set in briefly as I caught myself thinking “could this be another seizure?” but I dismissed the thought as quickly as it had appeared.
When I got in to the boys room Kevin asked me for a juice box. They were right on the dresser so I was surprised he required my help for such a simple task, but he was fumbling with the meter case looking for Jax’s blood testing kit and saying something under his breath about how he hadn’t been able to find it where he left it.
I came towards Jax with the juice box, slightly annoyed that my husband couldn’t complete this task by himself, but could tell immediately something was wrong as soon as I looked at Jasper. He wouldn’t look at me and he refused the juice box. His eyes stared straight ahead in a terribly frightening gaze. He jerked away from me as I tried to push the juice box to his mouth and as he began to shake and tremor I saw the disconnect happen in real time. This wasn’t like the other seizures I had seen before, I began to panic now too.
I knew the juice wasn’t going to get into him, though I did continue to try while I yelled at Kevin to get the glucagon ready. Kev handed me the syringe and glucagon powder.
And then *I* fumbled.
And then I bent the fucking needle.
To add insult to injury I then went on to contaminate the sterile needle by clumsily and absentmindedly attempting to straighten it with my bare hands. Realizing what I had just done as soon as I’d done it I yelled at Kevin to get the only other one we had in the house. The one in my purse.
I had no idea how much or little time I had. This was the most violent and gut wrenching seizure I had ever witnessed. I was positive that I was watching his last moments.
I had already begun to weep for him. For the loss of him.
I didn’t know how to save him.
I worked much more slowly and methodically with the second glucagon set while still thinking “how can this happen? How can I not save him? How can I watch him die!?” If ever there was a moment of all or nothing, this was it. I took a deep breath and filled the vile of glucagon powder with the water solution and shook that into a combined mixture. It seems strange to think that in a moment of such chaos and emergency I would have to slow right down and focus on this task. With shaky hands and baited breath I successfully filled the syringe with the life saving mixture. I thought I was too late but I had to try anyway, so I stabbed him in the thigh.
After the glucagon injection I tried to hold him down with my body. In part I did this because this is what Kevin instructed me to do as per the instructions of the 911 operator. But also in part I was trying to soften him because he was so stiff. I wanted to hold him one last time while he was still alive if I was going to lose him that night. So I held him on his side and I squeezed hugs into him and sobbed. And his body began to tremble as the glucagon kicked in. He began to moan and flail – so I excitedly tried the juice again, but he spat it in my face. I knew we weren’t out of it.
I kept screaming, “WHERE ARE THEY!? WHY AREN’T THEY HERE!?” To which Kevin would respond: they’re coming. I promise. Try to calm down, he can hear you.
Maybe he could hear me. My begging pleas of “stay with me” and “ please don’t die.” But how could I calm down? I didn’t know which breath would be his last.
That is how close to death he came.
We stayed at the hospital all night. They admitted him and kept him on heart monitors and IV bags filled with glucose that were being replaced as quickly and often as he went through them. He kept going low and none of us could understand why. The doctors and I came to the conclusion that his pump must have malfunctioned. We wondered briefly if maybe Jax had accidentally overdosed himself, but decided that he couldn’t have, wouldn’t have, in the end.
In an attempt to protect his childhood and innocence we disregarded our responsibility to teach our child how to independently manage his disease. We disregarded our responsibility to tell him the hard stuff, the dangers, in an effort to stave off anxiety.
He told me, after I had decided that I was going to rip off the “defective” insulin pump (burn it) and sue the company, that it was actually him who had given himself almost 16 units of insulin. I must have looked shocked and dazed because he continued of his own accord: “I wanted the Sprite, Mum, so I gave myself insulin when you told me not to. And when I still wasn’t low by bedtime, I gave myself more insulin.”
In fact he gave himself 7.90 units the first time and an additional 8 units half an hour afterwards.
A CGM couldn’t have prevented the lows he had that night, as he had quite vehemently overdosed himself. But it would have alerted us that something was wrong and kept us on alert. If we hadn’t heard that tiny mumble our phones would have still alarmed and alarmed and alarmed again till we dealt with it. In fact we likely wouldn’t have put him to bed as we would have been preemptively dealing with the lows. If we hadn’t heard that mumble we would have waited till midnight to check his bg.
Kevin later told me that when he first got down there Jasper wasn’t speaking or sitting up. He was lying on his stomach staring at Kevin wide eyed. And then his leg jerked. He didn’t make another sound after that. The silence of his seizure was deafening.
He would have been dead by midnight and none of us would have been the wiser until we had discovered him.
Dead In Bed Syndrome they call it. They don’t know much about it except that the diabetic is found dead in their bed by morning. They believe their hearts stop when they go untreated for too long with hypoglycaemia. Looking back, if we hadn’t heard him during that first seizure so many years ago the likelihood he would have died that night was just as high.
Our doctor once told us that seizures don’t happen to all diabetic children, that they were rare, and not to worry. Our nurse had told us to stop checking him at night so we could rest. She said, he’ll wake up and let you know if he’s low. She promised us this. The group of parents of Type 1 diabetics that we met with in support groups when Jasper was first diagnosed told us different.
The diabetes community, not the doctors or the nurses, but the parents and diabetics themselves said “stay alert, don’t listen to the dr’s and nurses that don’t understand the reality of this disease” they pleaded with us. “Check their BG’s twice a night every night” they insisted. “This disease is insidious” they said. “Unpredictable and too often deadly”.
But that was 5 years ago. Today we have the tools to predict these things, the tools to save their lives before they are in too much danger. If we had had a continuous glucose monitor (CGM) Kevin would have seen more than just that perfect number of 6.2 mmols when he put Jax to bed that night. But CGM’s are expensive and not covered by OHIP. Those of us with low incomes or one income families must learn to live without it or must ask for help (beg) from others to gain access to these incredible life saving devices.
Had we listened to those medical professionals when they had told us not to worry, and that it wouldn’t happen to us, and to sleep throughout the night … well we might be a family of 5 and not of 6.
But the parents of diabetics knew. The parents who had lost their children, or come close like we did this time, they knew.
As I struggle through the PTSD of that night I see more clearly now the enormous amount of people suffering daily with Type 1 diabetes that are still so misunderstood and neglected. I find it difficult to grapple with the fact that the Canadian government only JUST started covering life-saving prescription meds for diabetics (in Ontario). That this is only covered till age 25 and then you are on your own (and this is in Ontario, Canada, I cannot imagine how much worse the coverage, or lack there of, is in the USA). I look to our future and wonder how I will keep him alive when he is no longer living in my home, no longer being checked by me twice a night. I wonder how life-saving CGMs can be recognized for their life-saving importance but then not covered by the government.
But I already know the uncomfortable answer.
This is classism.
The middle class are going into debt to afford these tools. The poor are left to luck, the middle to debt and the wealthy to the ignorance of their safe nests.
I once wrote to Justin Trudeau pleading with him to help cover the costs of CGMs. I thought “he has children; he’ll care! He’ll understand!” But I forgot to consider that he is wealthy. If one of his kids got Type 1 diabetes he wouldn’t wonder what tools he could afford to get to keep his child alive, he would simply get all the tools. All of them. He wouldn’t know what it’s like to have to decide between groceries and diabetes equipment.
So yeah, I’m having a difficult time.
Read All About Glucagon and how to use it.