Let’s Talk About the Lows

It has been a long 5 months but then I stop to think and have a hard time realizing it’s *only* been 5 months since HD was diagnosed with Type 1 Diabetes. A year ago I would not have guessed this to be my new focus in life. A year ago, we were elbows deep in occupational therapy. I thought that was stressful, dealing with insurance not paying. I never knew how easy I had it.

I feel on a day to day basis we have a good system in place for managing his diabetes. We are beginning to understand which foods are better to dose for after he eats, and which ones we should dose before and then wait a hot minute before eating to avoid a spike in his blood sugar. We’re getting there but it’s far from easy.

After calling back and forth between our insurance, our doctor’s office and our medical supply company, we finally received our Dexcom starter kit in the mail at the very beginning of July. A Dexcom is a continuous glucose monitor, in other words, it’s a sensor HD wears that takes blood sugar readings approximately every five minutes. Previously, to get a blood sugar reading, we had to poke his finger, put a drop of blood on a test strip and the meter would spit us out a number. With his Dexcom, as long as he has his phone near him, I just need to look at my phone to see what his blood sugar is AND where it’s trending to go AND how quickly it’s guessed to changed. A finger poke is like lighting a match, you can see where you are at that moment. A Dexcom is like turning on a flashlight, you can see where you are, where you’ve been and where you’re going. Sounds pretty legit, right? It was very reassuring to have when we were on vacation, out in the sun all day. I felt very helicopter-y as I followed him around with his medical bag, just so I could get a reading on him.

 

We received his Dexcom with enough time to insert his first sensor and then head out for vacation. The sensors last 10 days before they need to be replaced so his next ones were handled by Grandma and Nanny. I handed over all the things, and said, “Here’s the directions- I’ve only done it once. I can’t troubleshoot yet...” It was reassuring to me to be able to see his numbers anytime I wanted to, even at 1:00 am.

His Dexcom isn’t fool proof though. The first one Grandma inserted ended up with a sensor failure so another one needed inserted after only a few days. ( The company is good a replacing failures!) The Grandmas had an extra task, since they were caring for him during the summer - swimming. He can wear it to swim but it needed a little bandaging to make sure it didn’t fall off and get lost on accident. Due to it being submerged, it’s sticky adhesive tends to weaken.

This was the first time I heard European sirens go off on my phone. I set his urgent low alarms to European sirens so I would know it was a medical emergency, as opposed to, “what did that beep mean?” (I have the option to have alerts on my phone when his blood sugar is too high, too low, increasing quickly, dropping rapidly, or if there is no data being received.) At 1:30 am while at the dome home, I had sirens blaring into my ear. Not exactly how one wants to wake up... I quickly grabbed my phone and looked at HD’s blood sugar number via Dexcom. 39 with an arrow pointing  down. My heart sank as I dialed up Nanny. She answered rather quickly, so I explained that she needed to go down and wake HD up because he was needing medical attention. Long story short, his sensor fell off and wasn’t able to get a reading. Phew! I was calmly panicking inside. My mom was impressed with how calm I was despite the circumstances. (For those not familiar with diabetes, too low of a blood sugar, and he’s at risk for passing out or having a seizure. If unresponsive, he has an emergency medication to jump start his system. Left untreated, and he’s a goner 😐)

While at my soster’ wedding the other weekend, I had a similar heart stopping experience. Throughout the day, we just let him roam free with the other kids. My dress didn’t have pockets so for a good part of the day, I wasn’t able to check on him by glancing at my phone. Perry has the app on his phone so he kept an eye on him. He had pretty decent numbers all day (especially considering all the food out for snacking on!) That evening all the adults gathered on the dance floor to celebrate. Around 8 pm I found raced him to the house we were staying at 50 yards away. He was a little high and wanted a snack, so I gave him a correcting dose to bring him back down, and added in units to cover the carbs he was about to eat. Once that was done, I gave him his nighttime insulin and off we went.

Half an hour later Aunt Bobby snagged HD for a dance, but he insisted he wasn’t feeling well so he and I sat down and together we checked his phone. 69 with an arrow angling down. I loaded up his shirt pocket with a large handful of gummy worms and he proceeded to finish dancing with his aunt, all the while diving into his pocket for worms. Fifteen minutes go by and we sit down to recheck his numbers. 39 with the arrow pointing down. My heart sank. HD knew that wasn’t good. He calmly looked at me and said, “Mom, I think we need to get the emergency stuff ready.” He’s not a particularly heavy kid, but after a few glasses of wine, and heels, he’s not the lightest thing ever either. I scooped that kid up so quickly, dove past a few people, and sprinted to the house. I laid him down on the bed, and gave him an “old fashioned” blood test. I’ve never get so much relief pass over me. 169. We discovered his sensor was falling off. He was fine. I was in a little shock, but we both managed to enjoy the rest of our evening. Crisis averted.

Not all the problems we’ve had are from failing Dexcoms. Early into our diagnosis, HD started his honeymoon period. Essentially after not working for a while, his pancreas starts producing insulin again. When we left the hospital, we were giving him 1 unit for ever 15 carbs consumed. After about a week, he would start crashing with low lows right after eating until we realized this phenomenon. We’re now using a 1:30 ratio, so in therory we were unknowingly overdosing him. This happened to my sister once when she was watching them. She knew we changed his breakfast ratio, but didn’t realize his dinner one was changing too. Luckily I called to check in with her and caught the error in time so she could give him extra carbs to even it all out.

That situation was just me not being clear on his dosing. We haven’t had any changes lately, but I still managed to overdose him the other night and I felt terrible. I don’t know if he had a cookie at school and wasn’t dosed for it, or if he had it one the bus, but regardless, he had a cookie without taking insu, so by dinner his numbers were through the roof. While Perry and I debated about who was at fault, the school or HD for not getting insulin (I would fault the school, but am happy to see he at least wasn’t left out  of having one), I was calculating how much of a correction to give him and then how much for dinner. AND I COUNTED HALF UNITS AS ONE. As soon as he pressed the button, my heart sank and I immediately told everyone to stop talking as I recounted. He should have had 3 units, but he took 5.

If I hadn’t caught it, he could have died. I had to take Ms. Gail to gymnastics so Perry watched him like a hawk. After two extra chocolate cups of milk, two spoonfuls of honey, and an orange he was perfect at 116. Thank you to Dexcom for tracking all that. I watched it unfold while at gymnastics. Thank you for technology! But seriously this diabetes stuff is no joke.

As his primary caregiver, this has been my worst fear, overdosing my kid. Why if I didn’t realize my error? Also equally as terrifying is my kid overdosing himself. Kids with diabetes are 50 percent more likely to deal with depression. That statistic is staggering. (I go through bouts of depression myself so I’m no stranger to it.) While overdosing can happen innocently enough- miscalculations and such, it can also be purposeful. I have seen stories posted in the mom’s group I’m in about their child deliberately giving themselves too much insulin and the mom’s are thankful they found them in time. I pray that thought never passes through his mind. But in just two short years, he’ll be in middle school, managing his diabetes on his own, carrying his supplies with him through the halls. At least that’s how it sounds anyway. But at this point, a half a unit too much of insulin (think the size of a the head of a pin) can send him low.

It’s hard not to be anxious and worried about it all the time. There have been more days than I can think of where I show up to work with puffy eyes from crying. There are days when I’m exhausted from staying up to check his blood sugar. The morning tend to be frantic, making sure he’s dosed for breakfast, he has his phone, and his carb counts are in his lunch box. It’s not big stuff, but it adds up to a lot of stuff to constantly be thinking about. I don’t wish this upon anyone.

Now I’m going to go wake him up from his slumber to force a cup of milk down his throat to perk his numbers back up so we don’t end up with sirens again like this morning.