How We Got Here – Part 1

On Monday, June 18, 2007 – the day after Father’s Day – our lives changed forever. (The week before, my two-year-old daughter had been guzzling water and saturating diapers at night, waking up during the night for water and falling back to sleep clutching her sippy cup.)  She slept til 10 and refused breakfast, settling into my lap only to fall asleep again until about noon.  When she woke again she was drowsy and limp, her breathing quick and  shallow.

An hour, a short exam and finger stick later – the pediatrician dropped the bomb on me.   My sweet, beautiful little girl had Type 1 (or Juvenile) diabetes and would need to go to a hospital immediately.  I felt all the color drain out of me and my knees went weak, right before she vomited all over me.

Over the next several hours spent in the emergency department at Reading Hospital, I cried intermittently, trying to be strong and not scare the hell out of Owen – who once again had a front row seat to another family drama.  Thank God my mom was there; I had a premonition that this could take a while (little did I know).  She kept Owen occupied and fed until she finally took him home around 7.  He hugged me goodbye as my eyes filled with fresh tears, and asked me if his sister was going to die.

Ava was hooked up to every imaginable machine, a vision of a parent’s worst nightmare, with various IVs attached to her arms – she clung to me, my tiny daughter, sweaty and limp and crying.   Nurses were coming and going, checking her vitals and drawing blood and putting up more bags of IV fluids to hydrate her.  At some point they told me they were starting an insulin infusion and I wanted to scream “no!” – “no! no! no!”  For I knew this meant there was no turning back, and I just couldn’t wrap my brain around it.  And I had the enormous responsibility of calling my husband on his long way home from work – the only time I could reach him – to tell him where we were.

The Children’s Hospital of Philadelphia has their own transport team, who were amazing, who swept in there and took immediate control – I felt a profound relief wash over me as they wheeled her  into their waiting ambulance.  And, nine hours after our ordeal had begun, we arrived at the Pediatric ICU to a room oddly bustling with people and activity at 11:30pm: paperwork, hooking Ava up to the machines next the bed where I would lie with her for the next 36 hours, settling her dad into the parents’ couch/bed.  With a mascara-smeared face and empty stomach, I was in for my first sleepless night in our diabetes journey. 

There were hourly nurse visits – checking blood sugar, running blood tests, taking away saturated diapers and, my personal favorite, rousing her and checking her pupils for signs of unconsciousness or coma.  It seems brain swelling is a very real complication of diabetic ketoacidosis (DKA) which can lead to coma or worse; my daughter, whose first blood sugar reading was over 400 (normal is around 80), had DKA (a condition caused by continuously high blood sugars and the resulting acid buildup in the body- ketones) and was a very sick little girl.

She improved remarkably fast over the next twelve hours and was soon awake and smiling, talking to us and loudly protesting the poking and prodding of strangers, then slipping into that mind-numbing screaming hysteria that made her hoarse.  It was amazing, though, how that insulin transformed her.  I’ve heard this from many other parents too, “it’s like, I’ve got my child back.”

We were soon moved out of the PICU and onto the Endocrine floor where we spent the next three days in a diabetes crash course, learning how to test her blood sugar, how to count carbs, how to draw up insulin into a syringe and give her a shot.   And not just one shot – she would have to have between 3 and 5 shots every day.  I felt faint as I held the first shot I ever gave her – my hands trembling – and she, defeated as she was, didn’t fight it.  But that was to change after we got home, where every day three times a day I’d have to chase her around the house and hold her down (kicking and screaming) to give her insulin shots.  

My journal entry just four weeks later:  We live in our own private hell.  And I’m so angry – resentful of all the parents who take their easy lives for granted.  Like we used to.  We can’t go anywhere without planning ahead: pack the glucometer, test strips, lancets, juice boxes and snacks, CakeMate and Gluco-Gel, and Glucagon for the worst case scenario.   I feel so isolated – while people ask how we’re doing I feel like they have no idea how serious this  all is, or how devastated we are – what kind of unique hell it is to have a 2-year-old insulin dependent AND stubborn child who fights every injection that she needs to preserve her life.  How many can understand one of the hardest things any parent will ever have to do – to literally be responsible for keeping your child alive every day?  Forever.  Never again will I have the freedom from worry over my daughter’s health and safety.


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