When becoming an artificial pancreas, it’s certainly recognized that there is a learning curve. Mine has felt quite steep and has been wrought with errors. I’ve tried to be easy on myself when making errors, though my default setting is relentless frustration. Most of my errors have been ones that have not put Madeline in real danger. Except for those I made in the wee hours of Saturday morning.
I changed Madeline’s infusion set on Friday night. It was an ordinary, unremarkable process, with no hint of problems: dinner, followed by bolus, followed by a long bubbly bath, ending with a set change. It’s ideal to have an opportunity to test out a new set with bolus before heading to bed. On this night, though, I did not give Madeline a snack before bedtime; it was late and, being in autopilot mode, I really did not give it much thought that the set was not tested. Error 1.
Off she went to bed, around 9 pm. I tested her glucose level before tucking her in: 257. This was high, yes, but not unusual for Madeline—especially when changing her set. For weeks I have noticed a pattern that every time I change the set, her level spikes for a few hours afterward. So, seeing that number did not give me much pause. Error 2.
I have made it a habit to test Madeline’s glucose level about every 2 hours when things are out of whack, especially at night. So, around 11 pm, I dragged myself up the stairs to her room, wielding Pokey and the Meter under dim light to get the reading. 304. I wondered why her level was higher and worried that something was wrong with the infusion set. So, I sniffed around for the tell-tale band-aid smell of insulin, coming up only with the scent of bath soap. Her skin was dry, so I reasoned the set was not leaking. The set is fine, I told myself, and decided to correct for the high using Hazel.
When I returned to bed, I lay there for a while turning the scenario over and over in my mind. I knew I was breaking protocol by not correcting the high with the insulin pen and changing her set. Her endocrinologist and I have been working to temper my tendency to over-react to highs and lows. I’ve gotten better about it, and I had actually just had this very conversation two days prior with Dr. Endo about how I often won’t change Madeline’s set after two highs, because she often runs high and stays there for a few hours after a set change—on top of the fact that her levels also run higher in the late evening anyway. So, I told myself to wait… wait until the next glucose check; give the correction some time to do its job. Error 3.
My iPhone alarm blared at 1:30 am, and I commenced another glucose check. 478. OH. MY. GOD. I woke Madeline, and she immediately began crying about having a bad stomachache. I ran to get her kit, furiously assembled the insulin pen, and gave her another correction. Then I tested for ketones… that test strip flared to a deep purple within 3 seconds of the dip. Large ketones are bad, bad, bad. I prepped Madeline for another set change–which, as it happens, is usually an unpleasant experience for her. She cried and cried as I inserted a new set, and I compromised with her that we would wait until morning to remove the one that failed.
I knew what was happening. My stupid decision to wait it out at midnight had launched Madeline into the early stages of diabetic ketoacidosis. Sheepishly, I called the on-call endocrinologist and told him the unraveling tale. Truth be told, I hesitated before calling, knowing that I had made very significant errors in judgment that had put my little girl in danger. I feared a stern reprimand, but told myself to get over it, girl, it this situation is serious shit. As I filled Dr. Endo in on the details, I was relieved at the lack of scolding; he probably figured that I already knew I had messed up. We worked out a gameplan for getting through the night and decided the “line” that would warrant a visit to the emergency room if crossed.
I hung up the phone and sat with Madeline while she cried about her tummy pain, trying to reassure her that she would feel better when the insulin began its work. Eventually, she fell asleep while I remained wide awake. I decided to test every 30 minutes, watching for the drop in her glucose level that needed to happen. It came: 410, then 309, then 278. Around 4 am, I finally cried myself to sleep, relieved at her improving condition while also angry at myself for my utterly stupid mistakes.
And then, by some miracle, when Madeline woke at 7, her glucose level rang in at 107 and the ketones had completely cleared.
Whomever is looking out for my little girl, thank you.