The final hours of Diabetes Awareness Month… I wanted to reflect on the past month, but was busy keeping vigil over my sleeping daughter last night. Yesterday started like any other Monday – wake up before dawn, shower and put on a clean pair of my favorite jeans (remember this, it’s important), get two kids up and off to school.
My daughter has been complaining of bowel troubles since Thanksgiving, spent most of Sunday resting, no other obvious symptoms of illness, except for some trace ketones. Yesterday I kept her home to manage the ketones and sat with her on the couch all day. She ate a little. My son came home and I asked him to sit with her because I had to pick up some things at the store…but then she started complaining her stomach hurt and she didn’t feel well so… I sat back down with her. Moments later, she was bent over the side of the couch puking like an alien all over the rug. There was so much stuff coming out of her and it just didn’t stop.
My son grabbed his geometry notebook off the coffee table and Mr. Tough Guy made a run for it while I stood there, hunched over her and momentarily paralyzed. This icky sticky goo, which smelled remotely like baby-breastmilk poo and somewhat resembled it, had splattered onto my clean jeans, my vans, and the leg of the coffee table. I’ll leave you with that image for now as we return to the subject of diabetes.
A sick child is no picnic. But a child with diabetes who gets sick has it exponentially worse. First of all – the sickness. It fucks with (sorry for the profanity, but diabetes asks for it) the blood sugars, in most cases making them high (which makes the child feel bad all by itself)… but in other cases, dreadfully low. Now imagine the child is vomiting and can’t keep anything down… and we need to give that child juice or candy to raise the blood sugar up to a safe range. Now what? This has the potential to spiral very quickly out of control, and land us in the one place we never want to be – the hospital. Or worse.
Let’s move on to ketones. High blood sugars can cause ketones (that acid buildup in the blood that can lead to DKA) and so can illness. Now – what do we do to treat ketones? First – we need to give insulin (remember insulin lowers blood sugar?) because it helps knock down the ketones, in essence by giving sugar directions on where to go rather than stay lost in the blood to be turned into zombies – er, I mean, ketones. Second – push fluids. Children should drink ounces equal to their age, per hour. If the child is 7, she needs to drink 7 ounces of sugar-freefluids per hour. Fluids flood the blood and flush out ketones. How do they get out? Urination – which is why we often check ketones by testing urine. (Since our little trooper has always been extremely uncooperative, we use a blood ketone meter – it measures ketones with the same finger stick we would use to test blood sugar.)
Okay, so that sounds easy enough, right? It should be, but like all facets of the diabetes monster – what works today may not work tomorrow. Now let’s go back to the vomiting child with the dangerously low blood sugars. He also has ketones. Obviously he needs fluids and insulin – but, he can’t keep anything down and insulin will only lower his blood sugars more. Ketones with low blood sugars are usually treated by eating something to raise sugar high enough to bolus insulin. But – how do you do that with vomiting? That’s a very good question… and one I don’t yet have the answer to, since I managed well enough without having to reach out to the endocrine fellow on call last night. I imagine the right answer is – the ER.
Last night I felt very real fear at the prospect of such an ordeal, and especially remembering stories I’d heard through the community about hospitals mismanaging diabetes andpreventing parents from managing it for their child. I rarely think it. I never say it. I HATE DIABETES! I hate it I hate it I hate it! I hate what it is, I hate what it can do, I hate what it has taken from our lives, I hate that my daughter hates it, and I hate that she cannot escape it, not for even a minute! I hate that it has taken children’s lives because it was sneaky and went undetected until it was too late.
I hate that we have to fund-raise, and constantly explain diabetes – what it is and what it is not, and that I have to pray someone somewhere finds the key to unlock the door to a cure before her life is over. I hate that healthcare providers don’t even know enough about it – and that parents have to be educated because theyare the ones who will have to ask for a finger stick test. I hate that this disease could kill my child. I hate that I’Mnot the one who has it instead.
Do you hear that? That is frustration, and the tears of tens of thousands of parents who would cut off their arm if it could cure their child. We are united in our desperation and our daily struggles, and why support is vital to our survival. Many T1 families complain of lack of understanding and compassion from their extended families… the inconsiderate comments and lack of interest in learning to care for the child. Many struggle to get adequate support and care for their child in school – from nursing mistakes to uninformed substitutes to inconceivable comments from ignorant parents about what caused your child’s diabetes (hint: it might have been you, you irresponsible mother, you).
And so – on that last night of Diabetes Awareness Month – I reflected on the fact that my child is sick, and that I’m crying in my car on my way back from the store because I’m scared she might get worse. I later reflected on how it all went down this month. How I started this month with hopes and dreams of grandeur (well, that’s a bit dramatic, but you will get the point)… that we’d use our posters and our resources to educate the public and ask our friends and family to share the symptoms of Type 1 diabetes. How I was so excited to receive a proclamation from the governor acknowledging this month as Diabetes Awareness Month, and encouraged by the quick response. Encouraged by the progress of several organizations to get the word out, and eager to potentially share my daughter’s diagnosis story with local news stations.
But no one could’ve have predicted the dramatic turn of events two weeks ago, and how one incident (or two completely unrelated incidents) could derail the advocacy and awareness we were all supposed to be united in….