When I was first sent home from the hospital with this not yet 11 month old baby, I was given some urine ketone test strips and was instructed to put some cotton balls in his diaper if i wanted to check ketones after high blood glucose readings. They somehow refrained from adding a sarcastic “Good luck with that” at the end. First of all, even if he weren’t in diapers, just how helpful is the information gathered from urine- this level of ketones over the past few hours that the urine was gathering? Plus, the strip was a series of colors that were just incrementally different from the others at first. Was it beige? Peach? Pink? Not that it mattered much because when I wanted to harvest these cotton balls the most, he was sure to have soiled the diaper in a much worse way. Luckily, at our first outpatient appointment, one of our sharp CDEs set us up with a blood ketone meter- Precision Xtra- and this thing gives accurate results. Immediately. With the same finger prick of blood you’d use for the blood glucose meter (ok, a slightly fatter drop). And we were given this little card with the simplest, scariest graph. At the bottom is a green bar to convey the easy, go ahead feeling of results below 0.6. Then, in the middle, is a yellow bar showing the increasing likelihood of needing medical assistance if ketones are between 0.6 and 1.5. And then the fire truck/ambulance red at the top letting me know if he’s above 1.5, I could have a very sick baby who could die soon. Again. Or that’s how I read it at least.
In the first few weeks of getting our pump settings and site insertions figured out, we had our fair shair of yellow results and a few just barely in the red. I’d call our beloved endos on call, and they’d instruct me to either do a site change or take it off and give lantus, whatever the situation called for.
And then a few months ago, Ben had a bit of a croupy cough, so we did the usual routine for that, and then, WHAM! He was sicker than I had seen him since that horrible DKA at the beginning which still hurts my stomach to think about. Ketones were going through the roof. 2.1. Ok, that’s not on my graph, holy shit, you’re off the graph, do I go the emergency room? Called the endos, and they said if he’s not throwing up, let’s try to manage from home. Ok. So I did as they told me and ditched his pump and started Lantus and Humolog shots. At least take the myriad of problems that can arise with a pump out of the equation. Kept giving him insulin and then of course had to force something with carbs down after, usually juice. He seemed better for a bit , but then …not so much. I had this sick, sick baby lying on me. Would not be put down. And then ketones were 4.3. What? Is that even a number? At this point I was getting so scared to be dealing with this on my own and would have rather gone to the emergency room , and why in the hell were they so calm if he was going into DKA again? One of the CDEs I was talking to (along with endos all day) said to calm down, it’s not DKA. The “yet” was implied I felt. But she was right. After what seemed like an eternity but was probably just 2 days or so (I lost track), he got better. Well, it turned into a sinus infection, and we got antibiotics. Yay, antibiotics!! My hero! Until the next time he got antibiotics. That’s a story for another day.