2nd Diaversary: 731 Days of Living with T1D

I like my birthday less than I used to. Of course it still happily marks another year of life to celebrate with friends and family, but March 5th also marks the last day my son would ever not have type 1 diabetes. On March 6, 2016, my son has been living with (diagnosed) T1D for 731 days (there’s a leap year in there), roughly 37% of his life.

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Semisweet Soap (0 carbs)

We haven’t figured out how to mark or celebrate his diaversary, a neologism for the anniversary of a diabetes diagnosis. I think we’ll wait for Henry to take the lead on this. However, I’ve been reflecting on this upcoming date for a few weeks now. Moments like this are mile-markers because they disrupt the routine of counting carbs, insulin delivery, and correcting highs and lows. If I think about the preponderance of diabetes care all at once, it’s overwhelming, so the task-to-task perspective allows me to get up each day, put my boots on, and do it all again. Yet, around these mile-marker moments, I usually peek out the window at the vast appalling and inspiring mountain range that is T1D management.

On March 1st, I recorded all my actions related to T1D care. Here’s one day of T1D care. It’s only one day. Some days are better. Some days are worse. We’ll do it all again tomorrow.


KEY

basal= background insulin being delivered by pump

bolus= a larger amount of insluin delivered at meal and snack to cover carbs

BG= blood glucose

CGM= continuous glucose monitor, provides an estimate of Henry’s blood glucose every 5 minutes

Dexcom Share allows us to see blood glucose values on our phones

ezBG= pump function calculates how much insulin to deliver to correct a high BG

IOB= insulin on board, the amount of insulin that has been administered and is still circulating


12:03 a.m.- check BG by blood, 74 with an arrow down to the side, half a juice box

2:00 a.m. – wake up to alarm, check BG on CGM, 147 with an arrow straight across go back to sleep

5:00 a.m.- wake up to alarm, check BG on CGM, 220 with an arrow straight across, so check BG by blood, it’s really 309, give 1.25 units of insulin, go back to sleep

7:00 a.m.- wake up to alarm, check BG on CGM, 137 with an arrow down to the side, so I get ready for work

7:30 a.m.- check BG by blood, 130, while Henry is still asleep, prebolus 1.5 units of insulin for a breakfast of 25 carbs

7:35 a.m.- help Henry get dressed so that the pump and CGM sites stay secure

7:55 a.m.- Henry eats breakfast, a low carb, sugar free muffin and a scrambled egg with cheese

8:35 a.m.- check BG on CGM 107 down to the side, get d-bag ready for school

9:05 a.m.- drop Henry off at preschool, get CGM on Wi-Fi, check BG by blood, 210, give .15 units of insulin to correct high

9:15 a.m.- listen to a diabetes podcast during morning email and class preparation

10:08 a.m.- text from Henry’s preschool teacher/s: Did another ezBG, I look at BG remotely, 320

10:59 a.m.- right before teaching, look at BG remotely, still 320

11:17 a.m.-text from Henry’s preschool teacher/s: We did another ezBG at 10:30 and it gave another .3. He had 1.07 IOB at the time. 

11:45 a.m.- Husband calls during class, saying he went to check on Henry, who has large ketones. Pump said to give 6.6, but this would be way beyond the most insulin Henry’s ever had at once, and it made my husband nervous, so he gave Henry 5.6 units of insulin to correct for large ketones and cover his lunch of grilled cheese and tomato soup. 5.6 is the second highest amount of insulin Henry’s ever had on board.

12:01 p.m.-look at BG remotely, 329 with an arrow up at the side

12:15 p.m.- listen to voicemail from drugstore about prescription problem with test strips

12:45 p.m.- while on a way to a meeting, read text from husband: I called the school and told them to go ahead and give the additional unit I was worried about, look at BG remotely, 363 with an arrow up at the side

1:15 p.m.- during meeting, unsuccessfully try not to think of Henry’s ketones and blood sugar

1:53 p.m.- text from Henry’s preschool teacher/s: We gave another unit and are continuing to push water. Will have cheese stick and beef stick for snack, husband texts back and asks that Henry be given 1 additional unit of insulin to help clear ketones.

2:30 p.m.- look at BG remotely, 263 with an arrow straight across

2:33 p.m.- look at BG remotely, 260 with an arrow straight across

2:38 p.m.- look at BG remotely, 260 with an arrow straight across, realize I have to stop obsessing and get some work done

3:08 p.m.- look at BG remotely, 141 with double arrows down, which means Henry’s BG is falling faster than 3mg/dL per minute, text to his teacher/s: Now he’s falling fast! What’s his real BG and how much IOB? 

3:16 p.m.- look at BG remotely, 111 with double arrows down, call classroom and talk with student worker who tells me that IOB is 1.16, I tell her to give Henry 2 glucose tabs, text husband this information

3:25 p.m.-look at BG remotely, 95 with double arrows down, I tell myself I am a logical person, that the sugar will do its job and the CGM is lagging, so he’s probably leveling off, not spiraling down

3:29 p.m.- text from Henry’s preschool teacher/s: 97 and .92 IOB, gave two tabs 15 min. ago, CGM says 84 with double arrows down

3:58 p.m.- look at BG remotely, NO DATA

4:16 p.m.- my phone buzzes with a Dexcom alert, I check, says he’s 64 with an arrow straight across

4:31 p.m.- my phone buzzes with a Dexcom alert, I check, says he’s 64 with an arrow straight across, then Henry walks through the door with his papa, who said his BG by blood was 112

4:46 p.m-. my phone buzzes with a Dexcom alert, I don’t check, knowing it’s still catching up form the fast drop

5:40 p.m.- check BG by blood, 95 and prebolus 1.4 units of insulin for a dinner of 40 carbs

6:10 p.m.- during dinner my phone buzzes with a Dexcom alert, CGM says BG is 74 straight across

7:00 p.m.- check BG on CGM, 121, an arrow straight across

7:28 p.m. – help Henry change out of his clothes and into his pajamas to preserve pump and CGM sites

7:32 p.m.- check BG by blood, 111, give .55 units for a high protein bedtime snack of 11 carbs

7:40 p.m.- add some new basal times and programs to avoid nighttime highs, which have been more or less constant for the past few days

7:56 p.m.- check BG on CGM, 160, an arrow straight up

8:56 p.m.- check BG on CGM, 157, an arrow straight across

9:32 p.m.- check BG on CGM, 134, an arrow straight across

9:46 p.m.- silence reminder alarm from pump to check BG 2 hours after insulin delivery

10:10 p.m.- check BG on CGM, 181, an arrow straight across

10:39 p.m.- check BG on CGM, 177, an arrow straight across, decide to check BG by blood, 209, give .7 units of insulin

11:32 p.m.- check BG on CGM, 168, an arrow straight across

11:42 p.m.- check BG on CGM, 158, an arrow straight across, set alarm for 12:40 a.m., 3:00 a.m., and 6:00 a.m.

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today 

 

 

T1D, Tummy Bugs, & Time

About this time last year, Henry was taking a bath when he threw up. Matt began checking for ketones and calculating how much insulin he could or couldn’t give to a kid with a tummy bug, while I ran out to the grocery to purchase lots of soda, popsicles, and jell-o with sugar.

Tummy bugs are tricky with T1D. Ketones develop with sickness and when there’s not enough insulin to break down the glucose. In someone with T1D, what clears ketones is insulin and massive hydration, but when someone with T1D is vomiting, the person can’t keep the fluids down so that insulin can be administered safely. As ketones and dehydration increase, probably coupled with a low blood sugar, the likelihood of DKA
(diabetic ketoacidosis) increases. Usually, tummy bugs send Henry to the hospital. Sometimes we ride it out in the ER with an IV and sugar drip, and sometimes he’s admitted to the pediatric unit.

A year ago I was standing in line, anxious and worried, about to purchase a bunch of sugar. As the cashier was ringing my items she asked, “Are you planning a party?”

Hurried and harried, I replied, “Yeah, something like that.”

She then asked me if I’d like to donate a dollar to the JDRF and pointed toward a stack of papers in the shape of sneaker. Our local grocery store participates in the JDRF sell a sneaker campaign, where a person can add $1 to his or her total and the money goes to the JDRF. The total irony of that insane d-moment sunk in, and I inhaled to stop any feeling from overwhelming me.

I said yes, and signed Henry’s mom dx’d 3/6/14 then ran to my car, hoping to get all this sugar home in time to help. A few hours later found us in the ER, and Henry recovered quickly.

There are significant dates, diaversaries (diagnosis + anniversaries), and yearly campaigns, that mark the emotional passage of time that comes from living with a chronic condition. Last week I was standing in the grocery store, purchasing food for dinner, Henry was healthy, playing in the snow at his preschool, a young boy had just passed away from complications resulting from T1D, DKA, and a tummy bug. The clerk asked if I’d like to donate a dollar to the JDRF.

I said yes, and signed Henry’s mom dx’d 3/6/14 then walked to my car, thinking about Andrew’s family, about Henry a year ago, about the relentlessness of time across a chronic condition.

Q. How Can Doll Toys Make People Angry? A. Add Diabetes.

Right before the new year, my Instagram and Facebook blew up with images of young girls peering longingly into American Girl Store windows at this.

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a diabetes care kit from American Girl

Initially, this was a feel-good story. The American Girl company responded to a petition created by Anja Busse (11 when she started the campaign two years ago) for a “Diabetic American Girl.” There’s a Facebook page to support the idea and the petition garnered over 4,000 signatures. And at the start of 2016, American Girl responded by releasing its diabetes care kit. 

How could this story go wrong? A young girl became an advocate and a company responded with an ethical decision that could help potentially thousands of children feel a little bit better about living with a chronic disease. But then the ignorant trolls.

screenshot_2016-01-03-08-32-51This is another example of someone in the fitness community not understanding that type 1 and type 2 are different diseases. To Vinnie Tortorich’s credit, he’s now educating himself on the fact that type 1 is an autoimmune disease and is unrelated to lifestyle and diet, unlike the CEO of CrossFit.

Kids who live with type 1 diabetes encounter many hardships, and aggressive ignorance by educated adults is harmful. Unfortunately, the only way to correct a lack of knowledge is to speak up during a diabetes dust-up.

The American Girl diabetes care kit is a victory. If a major corporation like Mattel (which American Girl is a subsidiary of), can get diabetes type 1 and 2 right, then so should CrossFit, the CDC, and anyone who shares a public opinion that expresses shame and blame over understanding.

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Diabetes, from Clinical to Personal

In this guest post, Rhonda Morgan, a registered nurse, describes how type 1 patients in diabetic ketoacidosis (DKA) and severe hypoglycemia were treated in the emergency department in the 1970s and 1980s. Rhonda’s understanding of type 1 diabetes changed in 2014, when the clinical became personal.

I began my career as a registered nurse in 1974, the summer I graduated college and passed my board exams. This was one of the sundry times there was a nursing shortage, so I started to work as a new graduate in a very busy emergency department (ED) of a 500+ bed hospital. It was grand. The ED affords ample opportunity to see just about everything. And we saw a lot of patients with diabetes in those days, primarily adults in DKA. Another frequently seen diabetic-related emergency was hypoglycemia (“insulin shock,” as it was known then), and these patients all too often presented to the ED, unconscious, with seizures, and with a very low blood glucose. Many doses of D50 (dextrose 50%) were administered empirically to known patients with T1D presenting with these symptoms. Likely no state of unconsciousness is as easily and instantly reversed. Occasionally, a child would present to the ED and be diagnosed with type 1, but children were always admitted to pediatrics, and never hung around in the ED for very long.

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Rhonda Morgan, RN in the ED, 1981, preparing an IV

The adult type 1 patient in DKA was one of my favorite patients to manage and care for in the ED, because the course was so dynamic, and one could see the favorable results of treatment over a short period of time. One of the really great ED physicians, with whom I worked for many years, would elect to keep these patients in the ED and treat them, as opposed to admitting them to the hospital, if they did not have insurance. This was much more financially feasible for the patient and family, plus the patient had constant care.

In those days, we had no bedside (point of care) blood glucose testing. We tested for glucose in the urine of our patients with diabetes using clinitest tablets. The clinitest method involved shaking a tablet out of the bottle into the test tube (because you could not touch the tablet with your fingers), adding 6 drops of urine and 10 drops of sterile water and waiting for the chemical reaction to occur. The contents of the test tube would fizz and generate heat, and then change color. After 30 seconds, one would compare the color of the liquid in the test tube to a color chart to determine the corresponding blood glucose. The test was very imprecise, but none the less we used this method of testing for glucose, along with blood tests that were sent to the lab, and took an hour or more to get the results.

clinitest

A few years later, test strips were available, but again, this method tested for glucose in urine and was not a direct or current measurement of blood glucose. DNA recombinant (Humalog/Novalog) insulins and basal insulins were not yet developed. We had regular insulin, NPH, Lente insulin, and ultra-Lente, the last two being longer-acting insulins. All were bovine origin.

Later in my career, I worked in critical care as a clinical specialist and helped institute computerized, and then later, web-based algorithms to manage hyperglycemia of critical illness, prevalent in both diabetic and non-diabetic patients in the ICU.

So, I have been around a lot of folks with diabetes. I have managed treatment and cared for of a lot of folks with diabetes in DKA, and in critical illness situations. However, I knew nothing about how to manage and oversee the maintenance of T1D until my grandson, Henry, was diagnosed with T1D at the age of 3.

Then, I saw the “other side” of diabetes— the personal side, not the clinical rescue, critical, immediate treatment regimen, but the everyday, every night, day-in, day-out routines that must be undertaken to keep him safe in the immediate, and to offer the best odds of avoiding the long term complications of diabetes. This side of diabetes management is just as critical as the side of diabetes care with which I was so familiar.

Our entire family had a learning curve that was fast paced. It was not easy, and it is not for the short term. It is for life. Henry was started on multiple daily injections at diagnosis in March 2014. Needless to say, this approach was filled with anxiety and unpleasantness for all. Thanks to his smart and advocating parents, he got his insulin pump and continuous glucose monitor in late May, just shy of 3 months into his life with diabetes. The pump ushered in a new learning curve, and the continuous glucose monitor gave us an eye on previously unseen data.

How I wish Henry did not have to live his life with diabetes, but he does.

I think back to 1974 and putting those 6 drops of urine in the test tube and feeling the warmth of the chemical reaction in my hand, and I contrast that to a direct blood glucose value we get multiple times daily in just seconds, CGM data transmitted over an iphone around the world, and insulin delivered with a pump, and I am confident Henry can have a happy, healthy productive life.

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Henry and his Nonna in 2014

‘Tis the Cookie Season

A few weeks after starting Kindergarten, I noticed a blue ring around my non T1D daughter’s mouth. When I asked her about it, she quipped, “Brain’s birthday,” which I later found out meant that with 24 kids in class over 36 weeks of school means  a birthday celebration every two weeks. Plus holiday parties. Even before type 1 diabetes entered our family, we’d reserved sweet treats for special occasions. If a child asks for something like a grocery store cupcake, we generally respond with, “It’s probably not a good idea for anyone to eat that.” Sure, a grocery store cup cake once in a while is fine, but treats like this seem to have permeated childhood.

I think most parents aren’t thrilled about the idea of their kids eating this kind of food. Now imagine your child has type 1 diabetes.

Generally, this scenario can go two ways. The child with diabetes is told he or she can’t have the treat by a parent volunteer or teacher, so then the kid gets to eat nothing (or sugar-free Jell-O) while watching his or her classmates enjoy deli cupcakes or cookies. In the second scenario, the child gets to eat the treat, because children with type 1 can eat anything, but it’s just impossible to get synthetic insulin to match the metabolic challenge that is a partially hydrogenated, shelf-stable, steroid level sugared, red dye #3 filled deli cupcake. So the kid with type 1 eats the cupcake, and has an elevated blood sugar for several hours, which is difficult to bring down, and during this elevated blood sugar, the kid feels foggy, tired, achey, thirsty, and upset. So, what’s the right choice? There isn’t one.

As parents, we’ve fallen on both sides of the sugar divide. We’ve let our son eat cupcakes at birthday parties and battled 300-400 blood sugars into the night that don’t seem to budge no matter how much insulin we pour on it. In other instances, we’ve brought our own low carb “treat,” avoided events, or distracted him. Moments like this reveal that diabetes is often a choice between bad and worse.

As we enter another season of sweets, we’ll fall on both sides of the sugar divide, and recognize that when a parent has to choose between bad and worse, it’s a pretty lousy feeling.

This week we were at a birthday party, for which we’d planned all day.  We knew the carb counts of what would be at the party. We’d purposefully kept our son’s carb intake light in preparation for the party. We had a rockin’ prebolus and temporary increased basal. At the dessert buffet, we let Henry choose anything he wanted to eat, and he ate gold fish, clementines, a cupcake, pretzels in a pool of white chocolate, peanuts covered in chocolate, and pop corn. He selected almost everything except for this cookie, but he kept circling back to it during the party.

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During his third trip to the table, I walked over to talk with him about it. He said, “Mama, look at those cookies.”

“I know,” I said. “Those cookies look really silly. I think they were made to look like a Dr. Seuss character.”

“Yeah,” he said, and he just stood there a long time. A long time. Not taking one. Not asking for one. Just looking.

“What do you think they taste like?” he asked.

Not wanting to pile more sugar on what was a high and rapidly rising blood sugar, I said, “I think they taste sour.”

As these words were coming out of my mouth, I knew they were simultaneously the easy and worse choice. We never tell Henry that he can’t eat something because he has type 1 diabetes, but in a way, I just did.

He walked away from the table and played soccer with a balloon as we helped clean up for the next hour. We headed over to our hosts’ house, where all the cookies and party treats followed. We ordered Chinese food for dinner, and learning from our previous Chinese food experience two weeks ago, we went bold with insulin and ran a combo bolus coupled with an increased basal. About 45 minutes after dinner, Henry’s blood glucose was 70 with 1.39 units of insulin on board.

“Hey Henry,” I asked, “Do you want to try one of those cookies with the silly eyes?”

“Yeeeeeesssss,” he shouted, and ran to the kitchen.

He came back with the cookie accomplished, and while dusting the crumbs from his thumbs on his shirt, he said, “Hey mama, those cookies don’t taste sour.” He said it with this kind of crazy half-smile that told me he was dubious about sour cookies from the get-go. Smart kid.

99 Diabetes Problems and Breakfast Is One Of Them

Having type 1 diabetes means following a pattern of exact measurements and calculations, all the while knowing that a pattern or desired result could likely not be the outcome. One day, Henry can run around like a madman at the playground and then come home to compete is some serious sofa jumping, and sometimes this physical activity will cause him to have a low blood sugar, but other times his blood sugar can go up.

However, there is a constant calculation in type 1, a perfect diabetes storm: food, stress, and biology, otherwise known as breakfast.

Food

Common breakfast foods such as sugary cereals, pancakes, waffles, and bagels are refined carbs that jack up blood sugars. The quickest way to see two arrows up (which indicates a rapidly rising blood glucose) on a CGM is to eat these common, simple carb-rich breakfasts foods.

Stress

I’m always confused by those scenes on T.V. shows and movies where families sit down in work clothes to pitchers of orange juice, bacon, and omelets before work and school. Really? Does this really happen? Really? A montage of a morning scenes at my house involves waking up two young kids, brushing hair and eating at the same time, putting at least one article of clothing on backwards, forgetting something, the kids playing a last minute game of school with stuffed animals just minutes before they go to their actual school. And diabetes care.

Biology

Breakfast is literally breaking a fast. When we go a long time without food, our body makes its own energy through glucoseneogensis, which is exactly what the word sounds like: the creation of new glucose, which is done from glycogen stores in the liver. In someone without T1D the beta cells of the pancreas send a message to the alpha cells of the pancreas to start the process of glucoseneogensis, which prevents our blood sugar from dropping too low, or around 70, in long time periods without food, like overnight or interminable work meetings.

In someone with T1D, the beta cells are non-functioning and therefore can’t communicate with the alpha cells. So the result of this is sporadic and unreliable glucoseneogensis. If endogenous (originating inside the body) glucose is being circulated, it takes exogenous (coming from outside the body) insulin to bring a blood glucose back in range. People with T1D are taught to account for exogenous glucose (glucose coming from food), but endogenous glucose is a crapshoot.

I don’t have type 1, and I’ve worn my son’s continuos glucose monitor on occasion. In the picture below, you can see a CGM on the top, which is my son’s. He woke up with a high blood glucose just below 200, and experienced a quick rise from the carbs he ate for breakfast. I woke with a blood sugar around 80, and it rose after I got up, cooked, and got the kids ready. The arrow points to where my blood sugar rose because of glucoseneogensis, but my endogenous insulin production quickly brought my level back down. The rising line on my son’s CGM shows just how difficult it is to get biology and math to line up.

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Top CGM: T1D with high waking BG post breakfast with insulin and carbs, Bottom CGM: non T1D with waking BG around 80 and glucoseneogensis

Here’s one of the great challenges of diabetes care: a person caring for type 1 diabetes has to make decisions that simultaneously require anticipation and reaction. Every morning, we have to react to the waking glucose value and anticipate the food, activity, emotion, and invisible metabolic processes that Henry will encounter during his day.

It’s taken a while, but here’s how we’re navigating the perfect storm of diabetes and breakfast.

Food

Now that we’re paying attention to food, it’s really obvious that everyone should not eat some things. On occasion, I’ve worn my son’s CGM, and I can watch my non T1D blood sugar rise after eating a few crackers or a bit of bread. When I eat a salad or lean protein, there’s no rise in the line that indicates my blood sugar. It’s an easy conclusion: some foods, usually shelf-stable refined carbs, should not regularly be eaten.

For breakfast we try to balance our son’s plate with a fat, a protein, and carb. A typical breakfast for him might be something like an egg sandwich (check out this low carb bread) with cheese and an apple, or a wholegrain waffle with sugar-free syrup, sausage, and an egg.

Stress

I got nothing here. Diabetes makes everything harder. In related news,  (see above) we’ve opened a casual breakfast diner at our place.

Biology

Diabetes brings consistent inconsistencies. This morning Henry’s waking blood sugar was 94. Yesterday, it was 186. His blood sugar will be inconsistent, but we can consistently pre-bolus. Lately, while our son is still waking up, often in bed, or as part of getting dressed, we pre-bolus his insulin for breakfast. As his body goes through the metabolic process of waking up, and we complete the morning tasks of getting ready, this is a great time to pre-bolus and let the insulin’s onset of action time line up better with the carbs he’ll be eating in about 15-20 minutes.

With all this science, research, and effort, here’s yesterday’s two-hour post breakfast data.

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Looks like we’ll be pre-bolusing and serving up eggs over easy at Casa Del Semisweet from now on.


 

Announcing our first GIVE AWAY!

You’re invited to comment and with a recipe, link, or breakfast idea that’s blood sugar friendly. I’ll leave a few ideas and links in the comments to some breakfast foods we’ve been trying. If you post your comment by December 31st, a winner, at random, will be selected to receive a bar of handmade Semisweet Soap. I’ll contact the winner for shipping information, and we only ship within the U.S.

Tom Hanks Sausage Links! a.k.a.: Co-Parenting Children with T1D

Presenting, in comic strip form, texts with my husband and fellow co-caregiver, wherein I just text letters to get his attention about a rapidly dropping low blood sugar, and autocorrect adds title inspiration: hanks link.

Tom Hanks

Parenting a young child with diabetes is a mixture of all-the-time-low-level-anxiety and anger/worry/warrior/defeated super vigilance, so it’s better to have two capable people on the front lines. My husband and I have a complementary approach to care; I’m the letter of the law and he’s the spirit of the law, and for our son to balance the burden of T1D across his lifetime, he’ll have to be both.

One random morning in March almost two years ago, my husband and I were learning to test each other’s glucose, but now we’ve tested Henry’s glucose over 6,000 times (20 months X 10 or more times a day). Every two days we change a site for his insulin pump and every seven days we insert a CGM (constant glucose monitor). About every 45 minutes, one of us looks at our phones to see where his blood glucose is, and every time we ever give him anything to eat or drink for.the.rest.of.his.life, we calculate the carbs and apply insulin or sugar.

I’d do this for Henry for the rest of his life if I could, but I know that living a life of independence, freedom, and self-sufficiently means I’ll teach Henry to care for his diabetes little by little, and that crushes me, because right now my husband and I are working really hard to replicate a pancreas, and it takes sleep,

my nightly alarms

my nightly alarms

brain-space, sacrifice, hauling gear, literal hours from our day, money, and focus. Type 1 diabetes is a heavy burden to share, but it seems insurmountable to carry alone.

November is both Diabetes Awareness Month and National Family Caregivers Month. Before my son was diagnosed with diabetes, I thought caregiving was typically something the younger did for the old. In it’s more raw version, caregiving reverses its normal evolution and becomes something the older does for the younger, either for a lifetime or a portion of a lifetime. Now that we’re parents who are also caregivers, I see how many other parents share this joint occupation, so this November, Semisweet will be highlighting stories of parents who are caregivers.

To kick off the discussion, please check out this great video, “I Am the Pancreas,” by Rick Suvalle, dad of two T1D kids. He followed his son and daughter around for a few days with his iPhone to show what caring for T1D kids is like. To the parents of young T1D kids: we are the pancreas!

New Insulin? Apply Glucose!

Tonight, before dinner, Henry slid into the kitchen like it was home plate. He lay splayed on the floor and shouted, “I feel low.” Then he groaned, “I feeeeel looooooooooooow.”

He started a new vial of insulin yesterday, so we’d been on the lookout for lows. In fact, we increase his ratio so that he gets 10% less insulin on the first days of new insulin.

Just a couple of minutes prior, his Continuous Glucose Monitor (CGM) read 128, with an arrow straight across. Now the CGM read 83 with one arrow down. I can count on one hand the number of times Henry’s told me he felt low. Like many pediatric people with type 1 diabetes, he has hypoglycemic unawareness. If he was telling me he felt low, then I knew he was low, low, low.

I gave him a glucose tab before checking his blood glucose, then wiped his finger, tested his blood, and during the four second countdown Henry asked, “What do you think it will be? 21?”

Here’s my four-year-old son, guessing his blood sugar during hypoglycemia. It’s moments like this that slay me as I walk the diabetes tightrope that is anchored to the wind.

“Let’s hope not,” I said. “21 would be very low.”

“What if it’s 12? Would 12 be bad?” he asked.

“Yes, 12 would be too low,” I said.

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“43! Mama, I’m 43.”

Henry ate two more glucose tabs and sat in my lap as he sweated through a shirt. But sure enough, the sugar started surging and he glided up to 61 then 124. The low left him ravenous, so he ate dinner in five minutes. Then after dinner (and insulin for dinner) this:

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Here’s the irony. The only thing that’s going to bring down 314 is more really potent, new insulin— the same thing that caused the 43. 

It’s Never Just a Number

Now is a really exciting time to have type 1 diabetes. I realize how absurd that sounds, but just 18 months ago we joined the diabetes world with a bag of syringes and a log book. A few months later our three year old transitioned to a pump and continuous glucose monitor (CGM). However, the data from pump and CGM were not compatible with a Mac. We found a workaround for the pump’s data through Diasend, but at the time it wasn’t approved for use in the States. Dexcom didn’t send data to anything other than the receiver. So these great tools existed, but they spoke different languages.

Thanks in large part to a vocal patient base, now a plethora of diabetes devices are working to speak the same language. The FDA is releasing products and software faster than anticipated. Just last week Dexcom G5 came out, which means a smart device can stand in for the receiver. Also, there’s the new Mac compatible software, Dexcom CLARITY. Here’s the great part: it works with Dexcom G4 and Dexcom Share. You don’t need Dexcom G5 to use Dexcom CLARITY. All you need is an account at Dexcom to download Dexcom CLARITY on your computer.

Information is power in the world of diabetes. Here’s the CGM data from the last two weeks.

Screen Shot 2015-09-07 at 10.41.36 AM

This is our best day; 74% of the readings were in range. On our best day we got a C-.

There are three common mantras in the diabetes world: numbers are just information, it’s never just a number, and keep calm and treat the number.

A few months after diagnosis, an adult friend with diabetes shared wise advice, “Never call a number good or bad. Just call it high or low.” We adopted this practice immediately, but are only now starting to see the reason.

Before programs like Diasend and Dexcom CLARITY, we looked at one number. If his meter said 70 we gave him a glucose tab or two. If his meter said 220 we corrected with an ezBG. Now we’re looking at aggregate data.

To keep our son’s blood sugar in range my husband and I have to work harder and more consistently on this than most of our daily tasks. We’re doing our best, so it’s easier to hear that he has, “significant time above the threshold from 9:50 p.m. to 12:20 a.m.” than, “those are some bad numbers.”

Right now, our best is a C-, but we have information we’re using to study for the test we’ll take in two weeks when we download the CGM’s data again. We have adjusted his basal program and decreased his bedtime snack bolus.

Here’s a question from next test:

Q. If a number is just information, what’s a gaggle of numbers?

A. Hopefully, a B-.

A Week In Review: Diabetes’ First Week at Preschool

It’s Sunday night. With only one work and school week behind us, the next week and the one after that loom. Last week was mixed with some new ratios (adjusting how much insulin is given for a set amount of carbs), a couple of lows, technology failures, and an embarrassing encounter with my neighbor. Here are some of the highlights mixed with a few tales of low.

Monday

Having a continuous blood glucose monitor (CGM) is like having a porthole into this strange metabolic dance between insulin, carbs, exercise, and stress. After Henry’s first day back at preschool it wasn’t his sweat soaked hair or his teachers remarking how much more “outgoing” he is this year, as it was the CGM data that told me he was a wild man. He was really, really glad to be back at school, exerting lots of energy, which lowered his blood sugar. For dinner he ate a cup and a half of pasta and was double arrows down with a reading of 135 an hour after dinner. By blood he was 80. His blood glucose never rose above 160 the entire night. If only first days back could be bottled and used with insulin to help control high blood sugars.

Tuesday

My husband teaches an 8am class, so on Tuesdays and Thursdays I get the kids up and off to school on my own. I woke to Henry’s pump beeping because the battery was dying. Here’s the short of it: a battery change requires priming, which means a new site. It still takes two adults to help with Henry’s site changes, so I cheated and changed the battery with a new cartridge. I did this in the dark, not wanting to wake up Henry, and in this great plan, I didn’t realize I’d put the battery in backwards. Now the battery cap would not come off and the pump wouldn’t turn on. No matter how hard I tried, I could not unscrew the cap. I began looking out my backdoor, wondering which neighbor’s door I could knock on before 8am and ask for “the man of the house” to help unscrew the battery cap from an insulin pump. Thankfully, I caught a neighbor on his way to work. With my wet hair still in a towel and in bare feet, I set feminism back a few years, but Henry got insulin and everyone got to work and school on time.

Wednesday

I know only about 10-20% of people with type 1 diabetes use a continuous glucose monitor (CGM), but based on the hold time with Dexcom, I’d say market penetration is closer to 90%.

Thursday

At preschool drop off Henry was 111 with double arrows down on the CGM, but he was really 60 by blood. He still had over a unit of insulin on board. I stayed during group time to correct the hypo. One juice box and 4 glucose tabs later his numbers were moving in the right direction. This was when I realized preschool has ushered in a new activity level, so while sitting criss-cross applesauce during story time, I increased the insulin to carb ratio. The further those dots (a glucose reading sent out every five minutes) are from each other, the faster things are happening.

arrows on CGM

Friday

There was a light spirit in the air; as a family, we were closing the first week and moving toward the weekend. Over breakfast and out of the blue Henry asked, “Will I always have diabetes?” Henry’s asked this question before, and we’ve always answered in the affirmative. Matt, Henry’s father, took a deep breath and said, “Yes.” 

This sat with all of us for a moment. Then Matt added, “But people are working really hard to create new things to make diabetes easier. It will get easier.”

It will get easier. We’re ready for the second week.