I know you hear us (parents of diabetics, diabetics) discuss how hard this disease is. How it consumes every waking minute of every day, how you never can tell whats going to happen next. How no matter how much insulin you take your sugar still can sky rocket, or how little you take how low you will crash. How just being, can cause things to happen and you have NO control over them.
This is a day in the life of Justice. I would like to explain a few things before I go right into it. Some words that not all are truly familiar with. I want everyone to have a full understand of what he is truly experiencing.
Low blood sugar: This is when you glucose levels drop under what is considered not just a normal level for non diabetics, but a safe level for diabetics. For Justice anything under 80 is considered low. When Justice goes low he normally says he feels like his legs and arms are made of jello. Usually the lower he is the worse he feels. Wobbly limbs, dizziness, sweating, nausea, almost like you're drunk. I think that’s the best way to explain it. Its not fun. Its scary, Justice once said it felt like he was drowning. When this occurs Justice must eat fast acting sugar. Such as glucose tablets, juice, gummy bears, or a spoon of honey. Blood sugar test repeated every 15 minutes with additional sugar IF he doesn’t come up to safe level.
High blood sugar: This is when you have too much glucose in your blood. Our bodies (non diabetics) naturally convert sugar, and carbs into energy, using insulin that our pancreas produces. A diabetic cannot do this on their own, they need insulin via syringe or their pump. After they eat they are to take insulin which is measured by counting the carbohydrates that have been eaten and what the sugar was at the time. This is never the same, it’s the only medicine I know where the dosing changes all the time. I mean a needle or machine cannot replace a pancreas, it just cant. The human body cant be duplicated., period. Anyway, sometimes its not enough, sometimes when they're sick they need more, or when they get stressed. A high is defined for Justice as any sugar over 200. Anything over 300 can be a more serious problem, and additional steps other than insulin may need to be taken. When Justice is over 250 he can get irritable, lethargic, have headaches, and become easily annoyed. This weighs hard on Synsyre.
Infusion site: This is a small cannula that goes under Justices skin. It can be inserted on the thigh, arm, stomach, or buttocks. It is connected to a tube, which connects to his pump and distributes his insulin.
Cartridge: This is the small “bottle” that goes inside of the pump and holds the insulin that is going to be distributed.
Ketones:. Ketones are produced when the body burns fat for energy or fuel. They are also produced when you lose weight or if there is not enough insulin to help your body use sugar for energy. Without enough insulin, glucose builds up in the blood. Since the body is unable to use glucose for energy, it breaks down fat instead. When this occurs, ketones form in the blood and spill into the urine. These ketones can make you very sick. We test for ketones whenever Justices sugar is over 250 two times in a row, over 300 at one test, or when he is sick. We have learned that even if a sugar is normal or even low the body CAN produce ketones. It’s a very scary thing.
Bolus calculator: This is a small device that calculates how much insulin Justice should get for food, or when his sugar is high. It can also be done on a regular calculator but we have found its more accurate this way.
Basal: This is the insulin that Justice gets every 3 minutes delivered in small increments, to keep his body stable.
Bolus: This is a larger dose of insulin used to correct a high blood sugar or to cover carbohydrates in foods.
I think that’s it. Here we go. We are going to start from the first check of the morning, which is technically 3am. But to simplify we will start at 6:30 which is actually second. This is a mock up of a typical day.
6:30am: Mom or dad check Justice, sugar is 198. Punch calculations into our handheld bolus calculator. Calls for .3 units. Turn him over punch it into pump.
7am: Justice wakes up, and gets ready.
7:45am. Justice rechecks his sugar. Sugar is now 155. He can eat breakfast. Justice had 3 pancakes and sausage. Using the bolus calculator we punch in his sugar, and how many grams of carbs he had. Today it called for 5.6 units. Punch into pump, and insulin is delivered.
10am: Justice is hungry and wants a snack. Sugar check. Sugar is 300. First thing we do is using bolus calculator figure out how much insulin he needs. Using a syringe this time we draw up the amount called for and give him the shot. Next thing is to check for ketones. We do this using a meter as well, which does the test based on blood. Another finger prick. 0.0 Negative. Phew! He starts downing water anyway to flush out ketones that may have started occurring, and we notice water helps bring his sugar down. He CANT eat. So he has some plain turkey. No carbohydrates.
12:30pm: Recheck sugar Justice is down to 158, and can have his grilled cheese for lunch! He eat, we count his carbs and administer his insulin accordingly.
REMEMBER EVERY TIME WE CHECK HIS SUGAR THAT IS ANOTHER FINGER POKE.
3pm Justice decides he and Synsyre want to play the wii. Activity can be dangerous if someones sugar is too high or too low. So we must always check before, during and after activity. Sugar check: 60. Justice eats 3 glucose tabs, and has to wait until his sugar is above 100. Although 80-100 is a great sugar, he needs to be a little higher when playing something like wii sports, because his sugar can drop once again.
3:20pm: Sugar recheck : 75, give Justice a few gummy bears since he didn’t want tabs. Recheck in 15-20 minutes.
3:40pm: 140 Great! Justice and Synsyre can play.
4:45 Justice feels low, while driving to get mom from work. Checks sugar 52. Justice grabs 5 gummy bears and starts chewing away.
5:00pm: Sugar recheck Justice is at nice 96. He feels much better.
6:00pm: Time for a shower, so Justice checks to make sure disconnection from his pump is ok or that hes not too low to get in there. Sugar check: 116. PERFECT. Justice disconnects from pump, and gets in the shower.
6:20pm: Justice reconnects to pump, and sits down for dinner. Sugar check: 124. Justice digs in! After a BIG meal, dad calculates insulin using bolus calculator. 10 units. Punch into pump, insulin delivered.
9:00pm. Bedtime. Justice checks his sugar, 295, according to bolus calculator he needs .5 units. Using pump, insulin is delivered.
11:00pm: Justice is asleep recheck his sugar, hes down to 240. Bolus calculator says not to give anything.
12:00am: Justice still asleep recheck sugar, Justice is back up to 260. Bolus calculator says to give .2 units.
But that is a raise in his sugar, and 2 consecutive sugars over 250. We check ketones, 0.0, we check tubing its fine, we change out infusion set. Cannula was perfect.
1:30am Justice is asleep. Sugar recheck, 199. Ok now we are getting somewhere.
3am: Justice is asleep, but disturbed by the sugar check, 206. Bolus calculator says not to give anything.
6:45am : Justice and I wake up, checks sugar 170. Bolus calculator calls for a correction of .1 and now we get ready to do it all over again.
This was one of our rougher days, ones that involve 15-20 checks, a lot of insulin and sugar and sleepless nights. Some days are filled with all lows which is so scary, lows can cause seizures and even comas. A diabetic can die from a low blood sugar if not treated properly and immediately. Some days are filled with highs, faulty tubing, bad sites, and lots of ketone testing.
Most days Justice does great! During the day his strength, night is a huge problem area and we are making some big improvements by adjusting his basal. Hes doing so much better. Being on the pump has brought his average sugars from 150-190 to 126-160 thats amazing! We have also reduced how many low sugars he was having by 70%. We are still working towards better control.
I wanted to post this so people really understand what these kids and their parents deal with everyday. You can read this and see, but you cant feel it huh? You cant feel how the low is scaring his mom and making him feel loopy. You cant feel the exhaustion that both mom and dad have from the middle of the night checks. You cant feel any of it. But you can be supportive, understanding, and see how you can help. You have no idea what just listening can do for someone.