Ellie’s Story

Something wasn’t right. It was a niggling, persistent doubt somewhat quieted by reasonable explanations for Ellie’s thirst and newly ultra-lean appearance. It was unseasonably warm in the fall of 2016, and 8 year old Ellie was playing outside until sunset, so it made sense that she was drinking lots of water and waking up in the night to use the bathroom. She appeared noticeably thinner, but she’d also hit a growth spurt. She was taller (skirts and shorts were suddenly too short); that explained her lean appearance. Cause and effect, right?  We didn’t know diabetes was the real cause and culprit.

Ellie grew listless and lethargic. She couldn’t concentrate on homework, fell asleep after dance practice, and didn’t feel well. We called our pediatrician. Ellie had only vague symptoms, but we had parents’ intuition that something was off.

Ellie’s doctor didn’t dismiss our concerns. She saw Ellie in the office mid-morning the next day, immediately making the T1D diagnosis from a urine test and ordering labs in the adjacent hospital.  Our pediatrician was calm and compassionate, hugging us as we left her office. We were stunned.

After finishing at the outpatient lab, we headed home to await results and instructions. Within the hour, the doctor phoned us to head immediately to the ER (adding that if we couldn’t get there in under 30 minutes, we should call an ambulance). My husband Jeff, in his office an hour away, would meet us at the hospital.

The ER had been informed of our impending arrival and immediately began an IV and battery of tests. Ellie was in diabetic ketoacidosis (DKA). Our ignorance was stunning; our heads were spinning. Someone asked how many times she’d lost consciousness. None! A nurse handed Ellie her personal cell phone so that she could watch cartoons and not run down the battery on my phone, which the nurse astutely insisted I’d need. Ellie was engrossed in Sofia the First while the team worked with efficiency and the room buzzed with phrases like “CT scan” (for cerebral edema), “ECG,” and more. Ellie was to be transferred to the children’s hospital nearly 3 hours from home. (Our local healthcare system has since welcomed a pediatric endocrinologist and opened a first-rate pediatric specialty clinic, but in 2016, this was our best option.)

Nana brought us clothes from home and a few essentials. We hugged tightly, spoke softly, and prayed fervently. I was permitted to ride in the ambulance with Ellie. She had never looked so small or heartbreakingly vulnerable as she did on the stretcher. The EMTs were angels on earth. Ellie was cold. They heated blankets. She was scared. They offered assurances and played Christmas carols. It was the week before Thanksgiving, and radio stations played hopeful, familiar holiday tunes. The carols were simultaneously comforting and incongruously jarring given our situation and surroundings. The music and the kindness of the gesture soothed us. Jeff followed the ambulance with his trademark steadiness. Somehow it would be okay. It had to be.

Ellie had started her day like any other, knowing she’d have a mid morning doctor’s appointment and planning to be back in time for recess. She ended the day in a hospital bed 160 miles from home. I dozed in a seat beside her. Jeff found a bed at the Ronald McDonald House inside the hospital. (Was it just a few weeks before that Ellie had helped make and serve dinner with my book club at our local Ronald McDonald House? In a blink, we went from providing hospitality to gratefully receiving it.)

In the hospital, we met knowledgeable, dedicated endocrinologists, diabetes educators, and dietitians who equipped us to care for Ellie. Their optimism was as essential as their expertise. We had information, hope, and an abundance of nerves and fears.

We were learning how to count carbs, calculate insulin dosage, test blood sugar, give shots, treat lows, correct highs, check for ketones, and more. So much more. We were drawing from faith, family, friends, and fat binders of diabetes info.

Family members honored Ellie’s bravery with thoughtful gifts. Loved ones delivered meals (with carb counts!), made us laugh, dropped off care packages, learned about diabetes right along with us, and prayed.

Ellie’s school struck a seemingly perfect balance of extra attentiveness to her health and complete normalcy in every other aspect. (We’ll share more.)

It wasn’t okay just yet, but it would be.

A word of thanks from Ellie

I appreciate the visits, cards, and special gifts that I received when I was diagnosed. It was awesome to have so much support. Most of all, thank you to family and friends for praying for me, learning about diabetes, and treating me the same after my diagnosis!