What doesn’t kill you…keeps you alive?

[Long post… want to skip to the “point?”]

This has been a challenging summer for training other people to manage the Bear’s diabetes. Since the BHE and I both work full time and we can’t afford to pay $15/hour full time to have our (amazing!) babysitter care for her 40 hours/week, we signed her up for several different camps to get through the summer. Every time a new camp starts, I have to try to explain what they will need to do with Amalia’s meter and pump at snack time, and what to look out for the rest of the time. So far, we haven’t had any camp leaders or counselors who have ever had a kid with T1 in their program – not even one that is older. All of this results in some sort of compromise between the “best” diabetes management and the most camp fun (with the least disruption to the camp). The first morning, the counselor looks at the info I have brought, looks warily at Amalia’s blood glucose meter & pump, and tries to smile. I smile, try not to speak too quickly or in diabetes jargon (the pump delivers insulin to her, not “bolus”), assure them that the Bear can help with some things (like bg testing) if they can just help with reminders, counting carbs (“and everything is labeled! See how easy?” smile. smile.), and listening to her if she says she isn’t feeling well. This really doesn’t cover how quickly things can go wrong, that a million other factors may affect her bgs and therefore her emotions, physical wellness, etc. But, panicking the counselor really won’t do anyone any good either. Most of the camps are only 1/2 day and it is much more likely that the one bg test & snack in the middle along with the encouragement to call me at any time will work out just fine. So. Today. First day of yet another camp – we get a bit of a rough start because of a blister so we aren’t as early as I had hoped. Still, the head counselor is an adult (nice, since all of the counselors at rec camp are in their early 20s and don’t inspire confidence) and she seems happy to take the time to look everything over. We go through the routine and though we don’t look at the pump itself or do a “practice” bolus, we walk through the instructions with pictures and she really seems on top of things. The Bear has been entering carbs into the pump more often these days too so I am feeling pretty good about the whole thing. I drive 1 hour to pick up my mother and take her to a neurology appointment about 20 minutes from her house. [Did someone say Sandwich Generation?] On the drive to the office, I get a call from the office. They have done her bg test (226) and just want to doublecheck that they understand the procedure from there. So, we talk through the Bear eating her snack, them adding up the grams of carbs, entering the bg number into the pump, then the grams of carbs, then delivering the insulin. All good. Just as we are about to walk into the doctor’s office, I get another call from the camp: “We’re not sure what happened. We put in the bg number (226) but never got to put in the grams of carbs and now it is delivering insulin but we don’t know how much. {deep breath. maybe it is just giving a correction for the 226 and I can walk them through entering just the carbs once this dose is complete}. They explain that the Bear was entering stuff and before they got to telling her to enter 20g for carbs she said “oops – I don’t know what I did”, they looked at the pump and could see it was counting up the dose. By the time they called me (not long, but pumps deliver boluses quite quickly), and I asked them what was on the screen, it was up over 8 units and counting. {8 UNITS! When she probably should have had about 1.2????} I asked them to look closely and be sure there was no decimal point – that it wasn’t 0.8. No, definitely (now) 9.something and still going. Tried to remember canceling bolus to talk them through it but it finished before we got to the right menu. {At this point I can feel my heart racing, my eyes burning, my brain scrambling to both sound calm and give them good instructions. Of course, all I want to do is scream, hang up the phone, abandon my mom in the waiting room, and drive 1 hour+ back to the camp} They were away from the camp so didn’t have access to all the food packed in her bag but did have a granola bar and they were heading back right then. Had them unclip her pump, give her the granola bar, and told them to test her as soon as they got back & to call me right away. The counselor asked, “just how dangerous is this?”. Someone who wasn’t really me calmly explained that too much insulin could be very dangerous and it was very important to keep giving her food and drink and testing her bg. The person who was really me was internally screaming, crying, and scared – so scared. It’s amazing how quickly your mind can think of options, judge them, and then move on to the next one. I contacted the Bear’s (did I mention that she is amazing?) babysitter who said that she could get to the camp as soon as possible (she lives about 30 minutes from it) which would get her there about a half hour before she would have otherwise. We talked about what would constitute the need to go to the ER. I called our pediatric endo office to get their thoughts on what the right things to do were – and whether I should just have the camp call 911. They calmly said that first we should verify how much insulin the Bear actually got. Then calculate how many grams of carbs she would need to counteract the extra. Then, as long as she was able to take in carbs, there was no need to go to the hospital. This made me feel better. Passed this on to Super-babysitter and waited. When they got back to the camp and tested the Bear she was at 52 — I instantly did not feel better. Told them to give her a juicebox and all of the glucose tablets in her backpack (do those tubes hold 8 or 10?? couldn’t remember but didn’t really matter). Then to test her in 15 minutes and hopefully by then Super-babysitter would have arrived. Next communication was that the Bear did get 10 units of insulin, was at 89, chatty, and wanted to finish out camp (another 10 minutes). When she came out at the end she was 84 so I told the babysitter to keep her unclipped from the pump, have her drink another juice, and leave the pump unclipped until they could eat lunch. We did all the math and she could have that juice and her whole lunch without getting insulin. Through all of this, my mom saw the neurologist, I tried to pay attention, and I drove my mom home. Every instinct in my body said I needed to get to where the Bear was and bring her home. But, every rational cell in my brain said that she was safe, happy, and I should go to work as planned. I myself was 60-ish for my bg and even after eating 12 glucose tablets (all I had with me) my CGM still pointed down. So, I called work, then stopped at CVS for more chalky tablets and headed home. I am so done for today. I am scared for my daughter and for my mother. I certainly don’t want to deal with my own diabetes. I am worried about a rebound high for the Bear that we’ll spend the rest of the afternoon trying to fight without causing more hypoglycemia. I don’t want to send her to camp tomorrow or any other days before school starts. But. I can’t let my fear run her life. I can’t be the Angel of Death and try to control everything. At the end of 2013 I said that I hoped to be able to let go of some of my fear baggage so that I could let the Bear do the things she needs to do… These kinds of experiences are going to happen and I can’t let them dictate what we let her do in the future – though we can learn from them to try to prevent similar situations.

Insulin. She has to have it to stay alive. There are no other options. We are lucky to have the tools we have — an insulin pump, a CGM (which she isn’t wearing this summer because it is too complicated/overwhelming for all of these camps — arrrrrgh!), a fast and relatively painless way to test her bg, carb counting and food labels, and insulin itself. But, none of that can change the fact that miscalculating the dose of insulin can kill her. In trying to do the very thing that saves her life every minute of every day, we put her life at risk. How can this be? 

This entry was posted in Balance, Getting it Wrong, Living with Diabetes, Medications, Others caring for your T1 kid, Sandwich Generation, T1 Kid On the Loose. Bookmark the permalink.

1 Response to What doesn’t kill you…keeps you alive?

  1. Nice website and great information ….if you want to contact me and see my blog about diabetes click http://www.curediabetesissues.blogspot.com

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