On Monday, July 27 somewhere between 4:00 am and 7:15 am, our eight year-old daughter Johanna suffered what all parents of children with type 1 diabetes fear most: severe nighttime hypoglycemia. The previous day, Sunday, was our first full day of our annual vacation with our friends and family at Lake Damariscotta, Maine. For Johanna, "JoJo", it was a day of non-stop activity dominated by swimming, swimming and more swimming. Her BG's throughout the day and evening were OK, nothing remarkable and surely nothing to portend a severe low blood sugar. She went to bed at 8:45 pm after a snack, with a BG of 178 mg/dl. Two hours later she awoke feeling low. Her BG was 98 mg/dl and we suspected heading downward due to the exercise lag effect of the day's swimming. We gave her a snack, tucked her in bed again, and then checked her BG ninety minutes later. It had risen to over 300 mg/dl. I gave her a correction bolus. At 2:00 am, I checked her again to make sure the bolus brought down her BG to a safe level for the night. It hadn't. In fact, her BG remained in the low 300's. It was her "sticker day", as Johanna calls infusion set changes. I figured the high BG's signaled it was time to change her canula. I was still up and wanted "JoJo" to wake with a "nice" BG to start her day, so I changed her insulin and "sticker". At 4:15 am her BG was 180mg/dl. It was going to be a good day. My wife checked JoJo again at 7:30 am. Her BG was 93mg/dl. Great. We decided to let her sleep a bit longer.
"JoJo's acting funny! She's not getting up!" It was around 8:15 am when her cousins Sam and Emily burst into our room. Natalie jumped up first, getting to Johanna's room as I pulled on a shirt and pants. Nat yelled for me in a curdled, fear-stricken tone. My heart hit my throat as thoughts careened off one another like a bad car accident. She's gone too low. Where's the glucagon? It can't be! Not JoJo! We just checked her! Call 911!
Seconds later I entered the room and saw Natalie holding our little girl in her lap. JoJo's pale, limp body and vacant stare silently told me more than all the commotion around me. I wish I could tell you we leapt into orderly action, methodically checked down tasks on our emergency list and calmly administered the urgent care our daughter needed. I can't. We were caught off-guard. Nothing like this had happened to Johanna since her diagnosis four years ago. I felt like I was thrust into one of my childhood nightmares, my feet stuck in Gorilla glue, the life-saving antidote (glucagon) just out of reach and the emergency call number jumbled into 191 or 119.
Natalie cradled JoJo, stopping every few seconds to call her back to us, "JoJo, wake up, honey!" "JoJo, its Mommy! Can you hear me?" JoJo slurred, but couldn't respond. I noticed foam on her pillow. Nat looked at me in shock: "I don't know what to do. What do we do?" The fact is, we both knew what to do, but at that moment, fear had us seized up. I said in what seemed like slow motion, "I'm going to call 911 and get the glucagon. Test her BG." I ran upstairs (I swear I bounded three steps at a time), called 911, provided the address for the ambulance, then told them to stay on the line while I went back downstairs to check on JoJo and Nat. Nat had just tested JoJo's BG. "Her BG is 120! What's that mean?" The BG reading made no sense to us: we expected a low figure associated with hypoglycemia. "Check it again to make sure. I'm not gonna give the glucagon if she's not low." Nat read the BG aloud: "110!" I set the glucagon aside, got on the phone and updated the operator on the BG readings and JoJo's condition, which remained on the edge of consciousness. Natalie and our friend Mary-Jo took Johanna outside and sat at lake's edge, still without any sense of what to do. They talked to her and patted her down with a wet cloth while we all waited for the ambulance's arrival. I followed after checking with the 911 operator about the ambulance's ETA. When I got outside, I asked to hold JoJo. Nat handed her to me and I walked up toward the driveway, carrying my little "Bones" (her nickname...short for "Funny Bones") in a koala bear hug as I kissed her cheeks, neck and forehead. I exhorted her to hang on, to talk to me, to squeeze me. I told her I loved her and that everything would be OK. I prayed. Hard.
The ambulance arrived within minutes of our call. As the EMT's checked vitals and loaded her into the ambulance, I recited BG's, weight, insulin type, birth date...everything we observed and anything I thought they could use. I think I even gave them the names of our dogs. Johanna's vital signs were stable and her BG was 146 mg/dl. I climbed into the ambulance and sat next to her, holding her right arm and brushing her face as the EMT's plied her for physical data. I liked the EMT's. For the first time that morning, it felt like Johanna was in capable hands.
I didn't like them when they told me only one of us could ride with JoJo, and it would have to be up front, shotgun to the driver; not bedside, next to our daughter. We complied immediately. As I exited the rear of the ambulance, JoJo said, "I want Daddy!" I stopped, kissed her again and told her that Mommy was with her and that I would be right behind. Hope nudged its way atop my fear and confusion. Nat went with the ambulance and I followed in a car driven by JoJo's aunt. I don't remember the ride. I just remember that it was Carol, and that she was telling me things in a calm tone.
The initial few minutes in the hospital ER were unnerving, as it seemed paperwork trumped diagnosis and treatment. The attending physician and nurses went about their work, but it didn't appear to be at the breakneck pace I thought was warranted. Blood was drawn, oxygen rates were checked, and other phone calls were answered. Come on people! We still had no answers. My cell phone rang with the tune of some hit pop song our teenager had programmed on it: it was Mary Alice, our CDE back home. She had returned my call I placed to her as I arrived at the hospital. I described the situation and provided all the details. Her response was confident, her experience assuring. "Based on what I'm hearing, I believe Johanna had a severe low and suffered a hypoglycemic seizure, probably due to an exercise lag. Her body responded by releasing glucose from her liver. She is probably in a "post-ictal period", or ending stage of the seizure where she is now recovering." She assured me that JoJo would be fine and that "PJ", our endocrinologist would be calling in to guide JoJo's care and monitor her progress. I thanked her as we ended our call and shared our conversation with Natalie before she re-entered JoJo's room. Then I stepped outside the ambulance port into the foggy Maine morning...and bawled. My emotions rushed through me: I'm JoJo's dad, the one person to whom God entrusted her for safekeeping...and she nearly died on my watch. My little "Bones" is under constant attack from type 1 diabetes, and there is no break...for her, or for us. I hate this f%^*&#' disease!
The epilogue to this story is good. Johanna recovered and was discharged later that afternoon. An hour after returning to the lake house, she was swimming with her cousins and friends. The remainder of the vacation was fun, although the around-the-clock 2-hour BG checks were a drag. Her zesty spirit has rebounded fully, and her glucose levels have stabilized (in a type 1 way). This weekend we're off to New York to see our Yankees battle the Red Sox. A win or two would be nice.