A Day in the Life of a Diabetic Toddler’s Handler
In the last post, I mentioned that M was being assessed by a developmental assessor for delays. My main concern was speech but it turns out that she is more concerned about adaptive delays. (She has about a 15% delay in speech/language but 33%+ delay in adaptive, which is things like using a fork & spoon consistently, taking off Velcro shoes, etc.) When we were going through the paperwork, she was required to ask about M’s daily routine, about feedings, and even if meal times are stressful. I had to laugh at that one. After I went through it all with her, she was like “Wow that really is a lot to deal with.” Hearing it out loud was overwhelming, even to me. I realized that people really just don’t understand what it’s like to have a child with this disability. So I thought I’d *try* to outline a daily routine & thought process of what we go through every day, and why it’s so stressful so often. (For those who have diabetes &/or care for someone with it, please keep in mind that she is still honeymooning so her pump settings are not yet precise so we still have lots of highs/lows. Also, she is also a toddler so her control doesn’t need to be as tight as a post-pubescent child. CGM values = Low is anything below 90; High is over 300).
· Wake up & look at the continuous glucose monitor (CGM) to make sure blood glucose levels are okay.
· Make sure M wakes up within certain time frame so that we can calibrate the CGM and get her fed.
· Get M from bed, come downstairs, get “juice” bottle (crystal light/water) & check her blood. Calibrate CGM. Figure out what she is going to eat. Count /measure the carbs exactly. It has to be between 28 and 40 grams. Try to hold her off because she doesn’t understand why we are getting her food out but not letting her eat it. Take the blood number and the carb number and enter them into her pump to find out how much insulin she needs. Dose her with the suggested amount. (Or not, sometimes we have to make adjustments for various reasons). Write everything down. Wait 15 minutes (we set a timer on the stove). Feed her (and all that entails for a toddler including cleaning up the area and her at the end). Make sure the dog doesn’t eat any of her food. Make sure that she eats all of the food.
· If the dog gets a piece, that’s carbs she’s not getting that she has been dosed for.
· If she doesn’t eat all of her food, that’s carbs she’s not getting that she has been dosed for.
· If she doesn’t get all the carbs she’s been dosed for, we have to figure out a replacement for those carbs and somehow get her to eat them.
· For the next three hours, we watch the CGM monitor to see if her blood sugar if on target, too high, or too low. Too low means another snack and round of blood checks/insulin dosing. Too high means another round of blood checks/insulin dosing.
· Then we have to feed her lunch at a precise 3-3.5 hours after breakfast because she starts crashing towards low blood sugar VERY fast right at the 3 hour mark. Another round of what to eat, weighing/measuring out the exact carb grams, holding her off, checking her blood, figuring out her dose and giving it, write it down, wait 10-15 minutes, feed her. Then we wait to make sure that she hasn’t crashed too low from the food not “kicking” in before the insulin. So we wait to see an upward trend on the CGM monitor before we put her to bed for her nap.
· Then again for the duration of her nap, we watch the CGM monitor to see how her sugar is doing. I generally don’t do anything while she’s sleeping if it creeps high but if it’s going low, I have to wake her up early to manually check her blood and give a snack if needed. If she is high, I wait until she wakes up, then check her blood and give a dose of insulin. After she wakes up, she may want a snack before dinner, so it is another round of weighing out food, counting the carbs, dosing the insulin, waiting the time, then making sure she eats the food entirely.
· Dinner time is basically between 6-7:30 and consists of the same thing as lunch. Just remember when I say count carbs exactly, I’m talking that you have to know every measure of ketchup, every spoonful of peas, the breading on the chicken, the glaze on the carrots. Lasagna would be having to know the precise amount of noodles she was getting, with the best estimate of the mixture of sauce in which you have calculated the carb grams in the tomatoes, sugar, onion, meat, cheeses, etc. And you have to know this all at least 15 minutes in advance. I would love to be able to eat a completely hot meal but generally don’t get to because it usually has to be done before we can weigh it, estimate carbs, and get her insulin dosed. Then we have to wait out the 15 minutes because I’m not cruel and won’t eat in front of her while she has to wait.
§ Don’t forget that you are dealing with a toddler’s finicky eating habits here. So if you give her insulin for something, you better make sure there is a high probability that she is going to eat it. We used to wait until the end of the meal to give her the insulin, but that didn’t work out so well because the time delay between food and insulin activating in your body meant that she would have HUGE blood sugar spikes that were nearly impossible to fix.
· After dinner, it’s another 3 hour analysis of the CGM monitor before the bedtime blood check. Calibrate the CGM. If she is high, we give a dose of insulin. (Which is the nightly game of how much because too much will cause her to go low in the middle of the night. Too little means she stays elevated all night and can cause ketones to develop.) If she isn’t high enough, then it is a carefully selected night snack. (A balance of carbs, protein & fat in just the right gram amount which is anywhere from 4g to 15g depending on exactly what her blood glucose is.)
· We also assess her CGM before we go to bed to make sure that her trend is going the right way that will sustain her through the night. If we messed up and she goes low, we get alerted by the CGM monitor with a loud vibration (we keep it in a glass cup), along with a loud alert sound. Then we check her blood, give her a real juice. Wait 15 minutes, check blood again, and then give a snack if the blood value has risen above the “low”. If not, we repeat. If we messed up and she stays high all night, then it is guaranteed she will wet the bed and I will have to change all the sheets, blankies, pump pouch and Pj’s, as well as give her a bath before I can start the morning routine. Because guess what?! You can’t give a bath/shower within the first 90 minutes after giving insulin. So if she needs a bath, it has to be before a dose or after the 90 minutes has elapsed. Why? Because it causes the insulin to be super absorbed and can drop her blood glucose levels low accidentally.
So that’s basically our life, except on the days we have to reinstall her pump cannula or her CGM sensor. It’s every 3 days for the pump and every 7 for the CGM if we are lucky and nothing malfunctions. The pump cannula is slighter smaller than an IV that we have to shoot with a needle into a fatty area somewhere on her body (usually upper butt but can be lower stomach, backs of the arms, or upper thighs). The CGM sensor is about the thickness of a needle you would receive for a vaccine. Either way, not easy to install on a 2 year old who doesn’t understand why you are sticking her with anything, let alone these large needles. She is pretty great with her blood sugar checks but it takes both of us to do the pump/CGM. My husband to hold her down while she screams and kicks and myself to prep the sites, insert the devices, etc. = FUN!