One of the hardest things about adjusting to diabetes care is the close calls, the ones where we are just waiting to see what’s next. Some involve medical equipment, others involve illness and still others unusual situations.
The first one I remember involved a glucose meter that wasn’t working. This was back when we were low-tech, nothing attached to Adam’s body. Adam felt like his blood sugar was low. His hands, still round with childhood, shook as he squeezed a drop of blood out of his finger to test. We waited. 140.
“That’s not right,” he said.
“I believe you,” I told him. I got out a different meter. This one said 71. That’s more like it. He had juice and we waited to retest.
After repeating the test a few times on both meters, I called the company. The young man on the phone, probably young enough to be my son, told me that tests can vary by up to 30% under FDA guidelines. I mentioned that if math serves me correctly, the difference between 71 and 140 is a lot more than 30%. After a long pause, he said “Ma’am you need to stop doing so many tests; you’re driving yourself crazy. ” He did not seem to grasp that in a little while, I had to dose insulin and how much I gave Adam depended not only on what he was eating, but also what his blood sugar was.
Adam and I moved on and went to the gym. When I hit shuffle on my music, what should play out of the hundreds of songs on my phone but “Stayin Alive” by the Bee Gees. I teared up because that’s what we were doing, staying alive. In the end, I got rid of that meter. At the suggestion of my favorite pharmacist, Fred, I bought another one that used the same test strips but was more reliable. Two checks in a row were always within ten points of each other. (OneTouch Ultra2 if you are wondering).
Other wait-and-see situations involved adjusting to insulin pump therapy. People who use an insulin pump must change the site every few days so the body doesn’t develop scar tissue that occludes the site. In our training, we were taught to do a site change and then dose for a meal on the new site. The large dose would get the site started absorbing insulin. I am not sure that has worked even once. On the contrary, it’s awful in most cases. Eating on a new site results in a blood sugar triple what it should be. It takes hours and hours to get it back under control.
Here is where I am so grateful for social media. Much of what I have learned is from other users, most of them adults who have figured out how to manage to the best of their ability. One in particular uses the same pump we do and laid out for me in detail her system for successful site changes: dose for a meal, eat and then do a site change while that meal insulin is still active. Give a good dose on the new site to get it going. Leave the old site on for a while. On a good day, this is still what works best for us.
Other times we have not been sure the pump was working. In the beginning, I would get out the book our doctor gave us and turn to the page on unexplained high blood sugars (haven’t eaten and forgotten to dose, aren’t sick, having a middle of the night growth spurt, having PMS, etc). It involves a series of wait-and-see exercises. Give a correction and wait 45 minutes. If it doesn’t begin working, think about changing the site. After two hours, give a correction by manual injection and wait some more. Along the way, check for ketones. Naturally, we would like to be sleeping during many of these episodes. Once this happened at school and Adam called me at work.
“My blood sugar is 381 and I don’t know what to do,” he said.
“OK,” I said. “Let me think.” I asked how much insulin his pump had “on board.” I subtracted that from the amount it would take to bring his blood sugar down and added the amount he would need for lunch.
“Should I eat lunch?” he asked. I usually make a low-carb meal for him if his blood sugar is elevated. I told him to go ahead and eat, but to inject himself with the amount of insulin I calculated. Injections work faster than the pump. In the end, it worked out fine and his blood sugar came back down and stayed level. But it’s hard to convey the stress I was feeling at work and how much I did not want to be there.
Other close calls have involved illness. Adam had one bad stomach virus that was stressful. He began vomiting in the night. It’s really important to check ketones when a person with diabetes is ill. Usually this is done with urine test strips, but it can be done with a meter using blood. I did not have the test strips for the meter, which are really expensive, costing $4 each at the pharmacy and $1.50 each on Amazon. On this particular occasion, he was too dehydrated to produce even the drop needed for the urine test strip. I waited until 7:30 am when I texted the neighborhood mom I thought would be most likely to have test strips. She was in the same boat – she thought it would be a good idea to get some but hadn’t gotten to it yet.
I put Adam in the bathtub and after a soak, we got the sample he needed. He had trace ketones, and just needed to stay hydrated. All day I gave him Gatorade and insulin for it until he felt better. The following day he rested. The third day, he said he felt good enough for breakfast. I made his breakfast and he gave himself his insulin, but once he sat down to eat it, he couldn’t. Then we had to figure out how to make up the carbohydrates we just gave him insulin for. I made the largest tumbler of Gatorade I’d ever seen. I told him to start drinking. I was sitting on the couch dressed for work. His blood sugar was dropping and he’d consumed the whole tumbler. At one point, I told him we’d give it ten minutes and then I was going to get out the Glucagon pen and give him a mini-glucagon dose. Glucagon is a chemical that signals your liver to dump the glucose it is storing into your bloodstream. Usually it is used in emergencies, and it’s expensive. It costs over $200 per pen and once you open it, it lasts only 24 hours. Luckily, his blood sugar came back up. But I didn’t go to work. I am thankful for a job where I can call and say I am staying home or working from home right now.
The other close call that comes to mind is our first boat dives after diagnosis. It was
summer in South Florida (because the weather had not cooperated our whole spring break) and we were not diving on our usual boat, which was full. We were diving with a captain we’d been out with before, Captain Susan. The weather was hot, which affects blood sugar levels, and the water was rough at the surface. Our first dive went OK. The current was significant, but we were used to it. Between dives, though, Adam’s blood sugar was in the 70s and we needed it to be almost twice that. He drank ginger ale. He was feeling seasick, as was another boy on the boat who was getting sick off the side. I knew the best thing for him was to get back in the water, because once we got below ten feet, he wouldn’t feel sick anymore. But if he threw up, we were staying on the boat to start the sequence I outlined above – checking blood sugars and ketones. I was really sweating it. Fortunately, we got him back in the water and it went OK. But it was stressful. I burned through my air pretty quickly on that dive due to stress.
In the end, we keep going. It gets easier. I no longer need to get out the book to look up unexplained high bloods sugars; we just dose and wait, inject and wait. I catch sleep where I can in between checks, watching and waiting, ready for the next close call, because this disease is unpredictable and there will be one.