I Can’t Count All the Snows

“I didn’t know it was morning,” Henry said as I raised the blinds in his hospital room. “How did it get morning?” he asked.

“You went to sleep last night, and got better. Now it’s morning. And look,” I said gesturing to the window, “It’s snowing.”

He looked out of the window, his arm held straight, but at an odd angle by its IV splint.

“I can’t count all the snows,” he replied as his eyes darted from heavy flake to flake melting just above the labyrinth of the hospital’s lower roofs.

My eyes felt like someone had rubbed them with sandpaper. Less than twelve hours before, in the ambulance ride from one hospital to the other, I tried to count the number of his hospitalizations, the nights I’d slept beside his isolette, in his hospital bed, or not at all. I lost count after fifteen.


But this is not that sad story. There will be sad (and happy) stories to come, and more nights to spend in his hospital rooms. That’s life with type 1. Instead, this is a story of advocacy; there’s power in knowledge.

Tummy bugs can be dangerous with type 1 because ketones develop quickly, while blood sugars often drop. As if this weren’t complex enough, the nauseous person can’t keep anything down so it’s dangerous to give the insulin and fluids needed to clear ketones. If ketones are high enough long enough, then DKA develops. Thankfully, an IV with a sugar drip is a simple solution.

This time, it took two hospitals, an ambulance ride, and eight attempts to start his IV. Early in the morning, on the pediatric unit, his ketones moved from large, to small, to trace, and we took a deep breath, once again witnessing the “difficult magic” of diabetes.

I watched Henry sleep and thought of the tense moments last night as the sixth or seventh person dug in his hand, searching for a vein while Henry cried out in fear and pain, his blood sugar teetering at 68 and large ketones, the blood work showing that he was becoming acidotic, the well-meaning medical staff, whose experience with type 1 was nascent.


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Outside, the first flurries of snow were falling, after a warm and protracted fall. Finally, the season’s cold was descending. In a few hours, we’d be on our way home from the hospital with another reminder that type 1 diabetes is a balancing act between highs and lows, too much, too little,—an emergency and the everyday.

 

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.

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.

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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