It's not easy being a pancreas. Frankly, I don't like the job. If my son's life didn't depend on it, I'd happily resign. Colin was seven years old when he was diagnosed with type 1 diabetes. We did our best to explain that since his pancreas wasn't working, Dad and I were happy to fill in. The idea took hold. Whenever he'd test in range he'd give us a high five and say, "Who's the best pancreas?"
The problem is we're not the best pancreas. We fall short. We go an entire day with perfect blood sugars and hit 300 for seemingly no reason. It's a constant learning curve.
The other morning I woke up at 6:45 a.m. and did what I do most every morning. Checked his log book to see if he was up in the night. (Thankfully, Chris becomes lead pancreas between the hours of 10 p.m. and 5 a.m.) Sure enough, Colin went low during the night. Sigh. I thought our dose of 7.1 Lantus was conservative. Guess not.
Chris wrote about the episode in a recent blog entry:
I hate the smell of insulin at 1:30 a.m. I hate the smell of just about anything that early, but especially insulin. It smells like something stored in an army footlocker. Maybe old combat boots. Perhaps a textbook on WWII tactical weaponry.
At 1:14 this morning Colin awakened me, his face close to mine. “I feel low.”
I hate those three words, too. Not because I have to get out of bed but because I know what it’s doing to his body. How ravenous he will be. I’ll need to act counterintuitive to that.
Okay, I won’t lie, I hate getting out of bed. It’s a long way up from the air mattress and my bones want to stay close to the ground.
So we do the pancreas dance. He trudges from the room and slumps in a chair, his jaw slack, panting. He gets out his insulin case, opens it, retrieves the poker, gets up, washes his hands, goes back, pokes, gets blood, inserts the strip into the meter, waits for it... waits for it...
I stumble into the kitchen without glasses and stare at the green numbers on the microwave.
1:14.
I hate diabetes.
“Beep.”
“58,” he says.
Normal people have a pancreas that works. Normal people take their pancreas for granted. You eat a bag of Doritos or a Snickers bar and never pray your pancreas will produce insulin. Your pancreas regulates your body’s blood glucose levels to remain steady somewhere between 80 and 120. Don’t hold me to that, it’s early. But that’s basically where you stay. Fall below 70 and you feel it. Fall below 60 and you shake. Keep going down and you’ll eventually pass out. Some people don’t feel it anymore, they can’t tell they’re getting low, but Colin can. Sometimes I think that’s God’s gift to us.
He has a spoonful of organic honey that organic bees have been spitting into organic buckets on organic bee farms somewhere in Organicville.* That will bring him up a notch and take the edge off. But we’ve only begun. He has 3 little mini-peeled carrots which aren’t approved by the organic bee society, but I don’t see anybody from that organization in the kitchen at 1:40 and their 800 number isn't staffed at this hour. So he eats the three mini-peeled carrots.
I’ve been known to make a stir fry at this point, chopping onions and cabbage and mixing with an egg or two. It’s protein and will help him hang on until morning. I grab two eggs from the refrigerator in the garage and Colin meets me there, pulling out a special drawer.
“I was thinking this,” he says, holding out a Granny Smith apple. The organic kind with the orange ring around it.
I roll my eyes like it’s fruit from the tree of the knowledge of good and evil. We haven’t had fruit for a long time but apples are slowly being reintroduced to the diet. I have no idea what this is going to do to his levels. His body will react wildly to the fructose. You will say, “But it’s an apple, leave the kid alone.”
Exactly. It’s just an apple. That’s why I hate diabetes. I have to dose him for a stupid apple.
I hate dosing a shaking kid who gets up in the middle of the night. I hate drawing up the insulin and handing him a needle he shoves into his skin. But if I don’t, his number will rise above 120, above 200, above 300.
So I write all this down in his book I also hate that says when he went to bed he was 111. And I see how much insulin I gave him to keep him in range overnight. We obviously overdid it, but when I compare the number from the previous night that was exactly the same, I wonder. Did he have more exercise? Did he not have something right before bed to hold his levels steady? Am I supposed to click my heels three times and say some magic incantation to keep him above 80? How does a pancreas do it?
... I hand him the eggs and get out the insulin bottle. We have determined that there were 24 carbs in the apple. There were also a few in the honey and the mini-peeled carrots.
“How much would you have for just the apple?”
“Mom would give me 2 units.”
My wife would give this dose without thinking. She rattles carbs in her brain like a supercomputer. I am right-brained, more creative, which is wonderful if you’re writing a song or a book or an essay on civility, but if you want to keep a kid’s glucose meter from saying “HIGH” and playing Mozart’s Requiem at 1:55, you need the left hemisphere of your brain and I do not have as much as my wife does.
I can’t give him 2 units. I do not want him shaking in an hour or two. But I don’t want him to go high either. That is my conundrum at 2 a.m. Forty-five minutes ago I was under the covers. I'm beginning to think I won't be going back to bed.
I decide on 1.25 units. I feel good about that. It’s a safe dose. I hand him the needle and he puts it in his thigh. Was it enough? Probably not.
He looks in the refrigerator again, the light reflecting off his face and the robe that makes him look like Hugh Hefner’s son. He sighs, closes the door, and rubs his eyes on his way back to bed.
“Goodnight,” he says.
“Goodnight.”
“I love you,” he says.
It won’t be long before he’s doing all of this by himself. It won’t be long before he’s staring into his own refrigerator in his own house or apartment. I’ll be asleep somewhere, oblivious to all of this.
“Love you, too,” I say.
And I do.
No matter how much I hate diabetes and organic bees and sharp needles and writing down statistics of a little boy who didn't do anything to deserve this, I love him. And that’s what will keep me up until 4 when I’ll check him again.
*Addendum*
4:20 a.m. It took me five minutes to wake him, but we tested. His level is 148. Within the acceptable range. Sigh
(* Not sure about Organicville, but the honey is called Really Raw Honey and can be found here.)
Sigh. Chris is right. Colin will be his own pancreas one day. In the meantime, we'll keep "filling in." As for that 1.25 dose? All I can say is, "Who's the best pancreas?"
Thank you for sharing Chris and Andrea. It is so hard when we know a suffering will last forever in ones lifetime. so hard to be sleep deprived plus all the other pain that goes with it.
ReplyDeleteim also amum of havind type 1 diabetic baby.you'described our lifes with this awful disease very realistic.when i read it i felt that im not alone thanks...
ReplyDelete