As you know, I’m trying to keep up with WEGO Health’s National Health Blog Month. Some topics resonate with me, making it easy to write; others, not so much. One such topic was slated for November 3: Write about a conversation with your doctor. I didn’t have much to say on the matter, but after last night’s experience, now I do. I had the most surreal conversations with an ER doctor, leaving me absent of any faith that most medical people know even the most basic of information about treating diabetic emergencies.
So yesterday afternoon, my daughters and I were out and about getting some shopping done. We had plans to see The Ordinary Life of Timothy Green at the end of our afternoon out. It happened to be infusion set change day, so we took care of that in the morning before leaving the house. When we did the insertion, Madeline told me that it did not feel right to her. However, it’s never comfortable, and usually she complains about how it feels. We had lunch before leaving home, about two hours after the set change, and her BG was in range at that time so I assumed the set was working fine. Plus, she never complained again about the feeling of the set.
Oh, the things we assume.
Here’s the short version. Shopping. Fun. Shopping some more. Hungry, so make a pit stop for an early dinner before seeing a movie. BG before meal: 501. Bolus. Eat. Bolus again. BG: 590. Drive to movie theatre. Change infusion set again, in the car, in the parking lot. Bolus again. Madeline crying, distressed. Test again: 570. Still wanting to see the movie. Think, this set will work and she will be feeling better soon. Purchase tickets. Set up little bed on the floor of the theatre. Madeline feeling pukey. Visit bathroom. Test again: “too high.” Return to theatre. Lay down. Test again: “too high.” Pack up. Madeline barfs in the garbage can outside theatre doors. Madeline cries. Sister Sophia cries. Google directions to nearest ER. Text Daddy. Swallow panic.
The hospital was one we’d never visited before, and I had no idea what to expect. This was a major area hospital, but I knew that most hospitals reluctantly treat pediatric T1D patients—if they do at all—and so I was mentally preparing for a transfer to our regional children’s hospital. Every now and then we discover a perk of T1D; today, it was nearly immediate service in the ER. I no sooner told the registration person that I had a T1D child whose blood glucose level was minimally in the 600s, than the door to the triage unit opened up and we were ushered inside.
As I blurted out the sequence of events that had been unfolding over the 90 minutes, I quickly realized that the nurse really had no experience with pediatric T1D. I had the same sense when the ER physician made her way to our little treatment space. As I tried to explain what was going on, I had the surreal sense that these people did not get it at all. Oh, she has an insulin pump? Yes, and I think that the set we inserted this morning failed. But I put in a new one and still the insulin dose I gave her seems to not be helping. So, she has the pump hooked up right now? Yes. The dose I gave her is not working. Her BG level won’t register on the meter. Oh, you tested her? And what were the numbers again?501. 590. 570. Too high. Too high again. And you said you gave her some insulin?
Despite their obvious confusion and utter unfamiliarity with the pediatric treatment protocol, they quickly took some steps that I knew were needed first: IV, then fluids and bloodwork to figure out just how much insulin she had on board. Why don’t we call Madeline’s treatment team at DHMC? Yes, please do that. Please.
It took what seemed to be forever for the fluid bolus to finish and the bloodwork results to come back. We did not see the physician for a very long time, so I watched Madeline’s behavioral responses like a hawk to reassure myself she was not going to wind up in a DKA coma. They did not return to test her BG level for over one hour. So, I tested it myself and I told the nurse the reading: 479. We’re supposed to do that for you. Oh really? Well, the protocol is testing in 20 minute intervals in situations like this. So, I did it and I will do it again.
Finally, the physician came back and reported that she had spoken with our favorite endo and had received directions for how to proceed with a fresh insulin bolus. Madeline’s BG had just registered 265. This doctor proceeded to tell me that the endocrinologist recommended 6 units of insulin. She wants to catch up on the insulin in Madeline’s system. <pausing and swallowing my disbelief> Okay, well, her BG was 265 just now. Six units is way too much insulin. Well, that’s what the endocrinologist ordered so we need to follow that recommendation. <There is no way they told Dr. C that the BG was 265. They had to have told her the previous reading of 479.> So if you can show me how to give her the bolus through her pump, we can do that for you. <You don’t know how to give a bolus using an insulin pump? Don’t you people ever have diabetics in this ER?!?>
I ended up administering the bolus, with the doctor marveling at how neat this technology is! I’ve been in pediatrics for 13 years and I’ve never seen a pediatric insulin pump before! This is so great! I learned something new. <Discharge us NOW. I need to go buy some carbohydrates to keep my daughter from the severe low that is coming our way.>
Thank goodness the discharge was the fastest I’ve ever experienced in an ER with any of my children. Before leaving the parking lot, I tested Madeline again: 132. With 5.5 units of insulin on board. We hit the nearest Irving station in 10 minutes, where we stocked up on chocolate milk, bananas, and pretzels while I said a thank you prayer for Madeline’s appetite, which was now voracious for having not eaten in nearly five hours. She consumed 90 carbs on the way home, all of it uncovered.
When we arrived home about 90 minutes later, her BG posted at 165. An hour after that, 143. An hour after that, 124. Somehow, we avoided a terrible low. But, I’m left trying to figure out why I could not assert myself better and refuse that 6-unit bolus. I had the right to refuse it. Is being in an emergency situation like this so disempowering that it leaves me unable to speak up or take action to protect my child?
<my thoughts, unspoken. And cleaned up for print.>