Dylan's DX

Monday, November 21st, 2005 was the day Dylan was officially diagnosed with type 1 diabetes, though his symptoms certainly presented prior to that.

Approximately 5 or 6 days earlier, we noticed that Dylan wasn't feeling well. It started with some extra tiredness, and increased thirst, and by Thursday of that week his thirst was insatiable. We have a water cooler in our kitchen and I remember that Dylan would grab a pint mug from the cupboard, fill it up with water, chug it all down, and then fill it and drink it again. He started going to the bathroom more and more frequently, and even wet the bed one night, though he had been toilet trained for over 2 years. He was pale and lethargic, but we simply thought he had the flu. After all, it was November (flu season), and there was no history of diabetes anywhere in our family. In fact, I knew absolutely nothing about diabetes at all, so I never would have suspected it.

Friday, November 18th, my husband and I went to Las Vegas for the weekend with the company my husband was working for at the time. My mother stayed in our house with the kids while we were gone. I spoke with her a couple of times over the weekend and learned that Dylan was getting sicker and sicker, though still none of us suspected diabetes.

On Sunday afternoon, my husband's dad took all three kids out for lunch. Dylan was incredibly thirsty by this point and ordered a coke (regular, not diet). He drank it all and had a couple more before lunch was over.

Sunday night the children went to their aunt's house for dinner. She noticed how sick Dylan was and gave him a couple of mandarin oranges to eat.

In retrospect, of course, I know how dangerous everyone's actions were. Three pint sized cokes and two mandarin oranges, plus lunch and dinner equals a whole lot of carbs for a diabetic. But everyone was simply trying to help Dylan feel better, not realizing that their actions were actually pushing him closer and closer to a hyperglycemic coma.

My husband and I returned from Las Vegas Sunday night to find Dylan very sick and already asleep for the night. The next morning he had a appointment with an Ear, Nose, Throat specialist because of a virus he had battled a few weeks earlier (another hint we missed). My mother helped me take him to the specialist because he was so sick by this point. I remember sitting in the waiting room and Dylan couldn't stay awake. It was 9:00am and he had slept 12 hours the night before, but he was exhausted. After a brief appointment with the specialist (who also agreed that Dylan had a bad flu), we decided to take him into the clinic up the street and have our regular doctor take a look at him.

Our doctor was on maternity leave and her replacement was a very young, recent graduate, who had just started practicing medicine (I honestly believe this was a blessing because her knowledge was so fresh and up to date). She took one look at him and said, "I think he has type 1 diabetes. But let me do a quick test to confirm."

She left the room for a minute and returned with a blood glucose meter, the first one I had ever seen. She did a quick finger poke and applied the blood to the strip. The screen started flashing "HI," but I had no idea what that meant. The doctor explained that the machine was testing the level of glucose in Dylan's blood and that any number over 10.0 mmol/l (180 mg/dl) would indicate a likelihood of type 1 diabetes and require further testing. I asked what the "HI" meant and she informed me that it meant Dylan's blood sugar level was too high for the machine to calculate. This particular tester had a measurable limit of 27.7 mmol/l (498.6 mg/dl).

She was calm, but explained that he needed to see an endocrinologist as soon as possible. She called the pediatric endocrinologist directly and told her about Dylan's likely diagnosis. The endo agreed to see us immediately. We literally got in the car and drove the 6 blocks to the pediatric endocrinologist's office. Again we were met by a young female doctor who was a wealth of information. She looked at Dylan, who by this point was sleeping on my lap because he could not stay awake even for minute, and gave us the news that he had type 1 diabetes.

The endocrinologist called the hospital and had Dylan admitted right away. She told us to head over there (it was across the street) and that she would clear her afternoon schedule and meet us there shortly.

Everything was happening so fast and I still really had no idea what diabetes was. I certainly was not aware of the gravity or permanence of the diagnosis. Boy was my world about to change!

When we got to the hospital we were rushed upstairs to pediatrics, where a diabetes educator and a nurse were waiting for us. A lab technician came in and took some blood and then over the next few hours I was overloaded with information about diabetes and all of things we would need to do to look after Dylan. I learned about insulin injections and about how to test his blood sugar level. I remember the diabetes educator having me practice injecting an orange and then injecting Dylan for the first time.

A dietician came in and taught me about carb counting and we designed a daily meal plan based on 3 meals of 45 grams of carbs each and 3 snacks of 15 grams of carbs each.

At some point the endocrinologist arrived and gave us the results of the lab work. The high glucose level in Dylan's blood confirmed that he had type 1 diabetes. In fact, his bg was one of the highest they had ever seen in a child. It was 51 mmol/l (918 mg/dl)!! They informed me that Dylan had been within 24 hours of a coma. The endocrinologist began to devise an insulin regime for him based on his meal plan and body weight.

I desperately tried to take everything in, but it still had not registered with me that this was a permanent, life threatening condition. In fact, I don't remember anyone ever telling me just how serious it really was. Perhaps they assumed I knew, or they didn't want to overload me. Over the 2 days of training and education, diabetes care was always presented to me in a way that emphasized its manageability. Looking back today, I realize how critical that was in defining the way I would view diabetes from then on. I never panicked or felt any sense of loss or grief for Dylan. I simply went about learning everything I could to ensure that I could provide him with the best possible care.

I remember the diabetes educator being surprised at how calmly I accepted Dylan's diagnosis and how vigilant I was about learning everything I could about it. Maybe that's the teacher in me. She told me that she has noticed over her years of experience in working with families affected by diabetes, that when a child is diagnosed, the parents usually react in one of three ways:

1) They immediately grieve, as if they have lost something very close to them
2) They essentially go numb and either deny the presence of the disease or get angry, questioning why them
3) They accept the diagnosis and jump right into fight mode

I was the latter. My reaction was to fight. To do anything and everything I could to find a cure. To fundraise, volunteer with JDRF, advocate, and educate. I needed to know that I was giving it my all. And while I've certainly mellowed a bit over the past 6 years, I continue to advocate for Dylan and the millions of other people living with diabetes. I no longer hold out hope that a cure is around the corner, but I continue to believe that it is out there somewhere, and it will be found one day, hopefully in Dylan's lifetime. And I understand that research takes time and, above all, costs money, so I continue to fundraise for JDRF.

I know diabetes is a scary disease. I know it's life threatening, and I know we always need to stay on top if it. But I don't let it take over our lives and I will never let it define Dylan. He is so much more than his disease.