On September 26, 2014 our lives changed forever. Mason was restless that night. He was unusually upset, and we could tell that something wasn’t right on that morning that would turn into a nightmare by the day’s end. As he had his bottle in the ripe 6 a.m. hour, he stared blankly over my husband Mike’s shoulder. Mike stood Mason on the counter to see what was going on and right then Mason collapsed and went unconscious. We called 911, and within a few minutes our home was filled with emergency response personnel.
As I watched, horrified and frantic, the paramedics attempted to wake our little boy up. After a few minutes the paramedics were able to wake him up, and after testing his blood sugar told us that we were going immediately to the hospital. Mike hopped into the ambulance with Mason, I hopped into our car to follow behind, and off we went to have our lives changed forever.
At the hospital they retested Mason’s blood sugar levels, hooked him up to an IV for fluids, and did what felt like a huge quantity of blood work. Mason’s veins were collapsing, and we had to physically hold him down while they drew vial after vial of blood from his little body as he screamed and fought. Mason seemed to be on a never-ending cycle between screaming, seizure-like episodes and staring blankly. As pediatricians and nurses continued to assess the situation, his blood sugar levels were coming up “HI,” which we learned meant that the monitor could literally not register a number. They gave him two different forms of medication to sedate him for a CT scan. Sedation was not working. Nothing seemed to be working.
Somewhere in the midst of this frightening experience, it became clear that the hospital was not going to find a solution for our little boy. Mason and my husband were loaded into another ambulance, this time taking him to a hospital with an ICU department. Mason was admitted to the Emergency Department ICU at Sick Kids, and things suddenly changed. Mason screamed for what felt like 18 hours straight, a countless barrage of doctors drew blood hourly. At one point I looked down at my child and felt sick: his body was so thin, his skin was black and blue from all of the needle pricks and he was in a state of complete distress.
A diagnosis was both relieving and frightening. “Type 1 diabetes” was foreign to us. “DKA” was foreign to us.
All we wanted was for them to make little Mason okay — as the information came out of the doctor’s mouth, the overwhelming feeling was that he would never be okay. No cure. Insulin every day. A life of decisions, tracking and difficulty. About 24 hours after the nightmare began, our baby was discharged. Mason wasn’t screaming anymore, but as parents, our hearts were.
As we sat through our first “Diabetes Daycare” class, we learned more about T1D. We learned about checking blood sugar, giving insulin and basic care. We sat on the couch in this makeshift classroom and cuddled with Mason who eventually fell asleep. And then he woke up. Screaming. As a parent, you try to comfort, but sometimes you just know that more is wrong. Mason grew violent, pulling out handfuls of my hair, biting me, biting my husband, biting himself. Mike took over, saying, “Daddy will help you,” and Mason sort of curled up and whimpered on our way back to the Emergency Room. This time he was given an MRI, and we were told that he had swelling and fluid on the brain.
I could use overwhelming and scary words to describe these few days, but I think the best way to explain it is to imagine you are thrown into the middle of the ocean surrounded by sharks. That is exactly how we felt hearing the words “Type 1 diabetes,” “ketones,” “insulin” and “DKA.”
You must learn to be friends with the sharks or you die.
The reality of our story is that we’re lucky. Mason was in DKA, complete distress and dangerously close to death. But our little guy recovered. We learned how to best manage Mason. And we made it out of the hospital as a family still intact.
Since making it out, we’ve made strides — Mason uses an insulin pump. We were lucky enough to have friends help us fundraise to purchase a Dexcom CGM (which has been a lifesaver), and we have even got NightScout hooked up. These things mean nothing to those who aren’t in our diabetes world, but they mean everything to those of us inside of it.
We will be celebrating his Diversary this month and the feelings become overwhelming at times. That said, Mason’s strength, courage and his ability to go with the flow have been amazing. We have good days, bad days, and days where we all cry, but we are fighting this disease and there will be a cure!
Read more about diagnosis in DKA.