Leighann Calentine, in her book Kids First, Diabetes Second, shares a beautiful blend of her experience when her daughter was diagnosed with diabetes, and a wealth of tips and tricks for simplifying the challenges that come when parenting a child with diabetes. Here is the story of Quinn’s diagnosis at age three.
Something Was Wrong
Spring had finally arrived. The weather was warm, and there was just a month left of preschool. My children were growing like the weeds visible from our picture window, and we began spending more and more time outdoors.
One weekend Quinn developed a fever—a startling 103 degrees. It bounced up and down, responding only briefly to acetaminophen. It was the type of high fever that worries parents, but leaves the nurses unfazed. I knew she must have been feeling awful because she asked for covers at night. She didn’t like to sleep with a cover, and when she did, it was mandatory that her feet be left exposed. Suddenly she wanted to be bundled up from neck to toes. I insisted on bringing her in to evening pediatrics hours on the third day of the fever. This was a Monday night. The pediatrician, not our own, said it was just a virus and she would likely be fine by Wednesday. Indeed, by Wednesday the fever broke.
That same night, the circus came to town. She had been looking forward to the circus for weeks. We left the baby with his grandmother, and our threesome headed for the Big Top. She donned the clown costume that had been her only wish the birthday before. She told us that she couldn’t wait to try cotton candy for the very first time. She seemed tired. She felt hot and clammy. She was a different girl.
She did not want to hang from the trapeze bar.
She did not want to jump rope.
She did not want to meet the clowns.
We took our seats as the lights dimmed and the extravaganza began. She took one bite of the eagerly awaited cotton candy, and her eyes welled up. She did not want another taste. She asked if we could leave early. I began gathering our things in darkness, but we managed to prolong the packing until the finale.
We brought our little girl home and tucked her into bed. Over the weekend she perked up a little. I attributed the episodes to the lingering effects of the virus, her fatigue a result of feverish nights, her dehydration and thirst caused by the high temperatures.
We were scheduled to work at preschool again that morning. It was just chance that we were all at school together that day. My husband had taken the morning off to spend time in the classroom, and since it was also our turn to clean, I left work to go to the school.
As I began stacking knee-high chairs and tidying up the classroom, my cell phone rang. On the other end was the pediatrician. Not the nurse, but the doctor.
“Where are you?”
“Where is your husband?”
“Actually … here with us.”
“Where is the school?”
I didn’t like where this was going.
“There was sugar in her urine. I was about to go to lunch, and I was looking over the morning labs. I want you to go to the hospital (literally two blocks away) and get blood work done, and then meet me at my office at one o’clock. Can you do that? It is really important that you do this quickly.”
My hands shook as I flipped my phone shut. I told my husband to gather her things. We needed to go now.
Quinn’s small body was perched on the edge of a large table, legs dangling. The doctor warned us this wasn’t going to be easy. I stood next to her, trying to hold her still as he poked her index finger, milking it to fill a pipette drop by drop with her ruby red blood. What took minutes felt like an eternity. He finished and left. Then, the two lab techs readied their supplies. My husband sat on the bench with our daughter on his lap. He gave her a bear hug to still her as the women drew vial after vial of blood from her small vein. As you can imagine, it was hard for her as a three year- old to understand why she was being held down and hurt. She cried and cried, and it would take several minutes for her to calm down after the techs finished taking her blood. Not since the deaths of his parents, one after the other, have I seen my husband cry as he did at that moment. It was heart- wrenching, but we needed to be strong for Quinn and not let her see the fear we were feeling. So, he choked the hot streams back.
We finally made it to the doctor’s office. Our daughter sat eating her drive-through grilled cheese and fries while drawing detailed pictures of family members with paper and pens she had found in the doctor’s desk drawer. She needed to go potty, and my husband took her down the hall. I sat in the room alone with the doctor and heard the news: “The glucose level in her urine was over 1,000. In her blood, over 500. She has diabetes.”
That’s all I could say. I apologized and the doctor shrugged it off.
When they returned, Randy received the news from the doctor, but I don’t think either of us really knew what was being said when we heard the diagnosis. It started to hit home when the doctor stated, “You have one hour to pack your bags and hit the road for St. Louis.”
The Journey Begins
St. Louis is not just a jaunt down the road for us. It’s 180 miles to the edge of the city and takes a little over three hours of drive time. Getting there seemed like an impossible feat.
Our world was suddenly in upheaval, filled with unknowns. We didn’t know how long we would be gone, or where we would stay once we got there. We didn’t know what to tell our employers—neither of us returned to work, though we both said we would be back after lunch. But, most of all, we didn’t know the gravity of the situation or what was in store for our daughter over the next few days. On the way, I talked with the nurse in St. Louis who would be expecting us. She cautioned, “If she begins to throw up, she may have ketoacidosis. This is an emergency situation. Do not come to admitting, but go directly to the ER.”
Until that conversation, I knew that it was serious, but I had not realized it was a life-threatening situation. And we had nearly two hundred miles of striped pavement between us and the care she needed.
When the doctor matter-of-factly rendered the diagnosis in her office earlier that afternoon, I assumed that we would be crossing town and checking into the hospital where both of my children were born. We live in a decent-sized city with a major university and two hospitals. Yet our daughter could not be seen at either one, since there is no pediatric endocrinologist on staff. It was unfathomable that we had to travel so far for her care.
When we finally arrived, I nearly cried with relief. We slowly climbed the circles of the parking garage decorated with cheerful animals denoting the levels and found a spot up high. We carried our daughter, clutching her Pony, to the elevator and across the walkway.
The nurse’s aide brought small scrubs, adorned with colorful fish, for Quinn to wear. They were much too big, and a hunt ensued to find some that wouldn’t slip off her emaciated body. A woman in a white coat holding a clipboard, flanked by two others, came into the room. A dozen questions and a quick exam later and, we were left alone in the room again.
We were told that the nurses would take care of us overnight. They would be in shortly to retrieve us for blood work and begin round-the-clock monitoring and insulin injections to get her blood glucose levels under control. The endocrinologist would see us again in the morning.
A nurse came for my daughter, and we walked with her down the hall and around the corner to a brightly lit sterile room with a tall white bed. They were going to insert her IV and take blood samples. Up until this point she had not been scared. Except for the blood draw earlier in the day, nothing had been invasive. But she became frightened as three nurses readied their supplies. I was instructed to hold her down—really hold her down. I laid my body across her torso and anchored myself across the bed. My head was next to hers and I told her it would be okay.
She let out a blood-curdling scream, worthy of a slasher movie. All I could do was lie across her holding her still. I could not take away her fright or the pain.
Her screams lasted for the length of the procedure and were so loud that I thought my eardrum had burst. I honestly could not hear anything in that ear for at least 15 minutes. I consoled her as the nurses finished taping her IV in place. Then, the nurses went looking for a midnight snack for our girl—cheese pizza from the cafeteria that is open day and night.
We were finally able to settle in for the night.
I wish I could say I slept that night, but I didn’t.
She awoke in good spirits as she did each morning. Although her glucose levels had been stabilized overnight, they would continue to fluctuate as the endocrinologist figured out the right concoction of short-acting and long-acting insulin. However, the threat of ketoacidosis, convulsions, or coma had seemed to pass. We had survived the longest day of our lives and, for a moment, we breathed a sigh of relief. But it was short-lived. We still had no idea what lay ahead of us. What did it really mean to have a child with type 1 diabetes? We were about to find out.