Updated: Jun 2, 2021
July 16, 2008: “I think it might be something metabolically. I’m going to test his blood sugar. It’s 495. I have to call CHOP. I’m not the one to officially diagnose, but you have to brace yourself for being told your son has diabetes.”
When the pediatrician came back into the exam room, I was told to go directly to CHOP’s (Children’s Hospital of Philadelphia) ER.
Diabetes. That’s what I heard, that’s all I heard.
That was the day our 11 month old baby, Mario, was diagnosed with Type 1 Diabetes. His blood sugar, or blood glucose, was so high, that he had Diabetic Ketoacidosis, DKA. DKA is a serious condition which can lead to a coma or even death. A virus attacked Mario’s pancreas. That’s what caused his diabetes. But he’s just a baby, how did this happen? In his 11 months, he was never sick. Was it something I did while pregnant with him? Can he still have his 1st birthday cake? What do we do now? How do we do this? We spent the first night in CHOP’s ICU, due to the DKA having caused brain swelling, Cerebral Edema. I remember Mario having so many devices connected to him. His little arms had ‘no-no’s’ strapped around them. The no-no’s were velcro, cast-like bands, on each arm, so he wouldn’t pull on/out all of the cords, IV’s, etc. “No-no,” please don’t touch!
After the second day, we were able to move to a regular room. It was now time to learn all about Type 1 Diabetes (T1D.) Carb-counting, hyperglycemia (high blood sugar), hypoglycemia (low blood sugar), insulins (Novolog, Humalog, Levemir, Lantus), syringes, blood glucose meter, test strips, ketone test strips - so many things to know and learn. A definite refresher in math, too! How could we possibly poke a syringe filled with such a tiny amount of insulin 5-7 times a day into his little arms, thighs, or buttocks? How could we prick a needle into his finger tips (and toe tips) 5-7+ times a day to test his blood sugar? We did. We had to. We had no choice. Insulin is his lifeline. It is not a cure, but it’s what keeps him alive. We spent 5 days at CHOP. We had a crash course in T1D, and then were sent home, by no means as experts. We’re still not experts, 13 years later. With T1D, no day is the same. Good news is, we’ve never been back to CHOP for a T1D emergency, either. We wish we would have known the first signs of Mario’s T1D. He was saturating his diapers, drinking lots of water, falling asleep anywhere and everywhere. Prior to his diagnosis day, we had contacted our pediatrician, and spoke over the phone about those symptoms, and it was thought to possibly be a growth spurt, maybe even teething. Approximately two weeks later, Mario became lethargic, and that’s when we went to the pediatrician, and then right to CHOP. Today, Mario is 13 years old. He will turn 14, by the time ‘Score for the Cure,’ takes place. Mario’s love for ice hockey started with, ‘Learn to Skate,‘ when he was 5 years old. He started playing when he was 6. He hasn’t stopped! Playing hockey is the best thing for him and his T1D. Mario’s blood sugar range should be 80-120. We try. He tries. At 8 years old, we decided to move forward with getting Mario a Continuous Glucose Monitor, CGM. He wears a Dexcom G6 CGM everyday. This monitors his blood sugars, so no more finger pricks. I honestly don’t know how we survived all the nights (especially) prior to this. Going low overnight is the biggest concern. If he goes low, we have to wake him up and give him something, usually juice, to bring his sugar back up. We’ve had many interrupted, sleepless nights.
A year later, we decided to get Mario on an insulin pump, no more insulin injection shots. He is currently using the Tandem t:slim X2 pump. Being on both the CGM and pump has given Mario a little more freedom. He is able to go and do more things, without always having us there. His CGM has a Bluetooth transmitter with a sensor, which connects to his iPhone, which then runs off an app to our iPhones. We can see his blood sugar readings, as long as the Bluetooth and WIFI are connected. Having the pump means he continuously receives insulin and is also able to dose himself, versus someone giving him insulin injection shots. We are thankful for all of the technology, but it’s still not a cure! When Mario plays ice hockey, he disconnects his pump, but always keeps on his CGM. He can’t chance breaking the pump while on the ice. When he is disconnected from his pump, that means he is not receiving insulin. He tries to have his blood sugar at 120 for practice and games. He tries. There is so much to factor in for an accurate blood sugar, especially when playing ice hockey; what did he eat, how long ago was it when he ate, how much insulin did he give himself when he ate, did he take into consideration that he was going to be skating, what did he drink, how active was he prior to getting on the ice, what’s his blood sugar reading before he disconnects, should he give himself more insulin, how long will he be disconnected from his pump? The guidance and directions we follow comes from Mario’s team of endocrinology professionals at CHOP. We visit them every 3 months. They are so wonderful, and have been with Mario since diagnosis. Each visit, there are always changes, especially to his insulin dosing. How much did he grow, how much does he weigh, what’s going on with ice hockey - how demanding is his schedule, are there any big trips planned, this all gets factored into his diabetes management plan. Change is part of everyday with diabetes. No day is ever the same. Mario may have diabetes, but it doesn’t ever stop him from living life, and doing what he loves, playing ice hockey! He is strong! He’s our Super Mario! We will never give up hope for a cure!
ABOUT THE AUTHOR Kristie Dewees is mom to Mario, a 13-year old T1D hockey player who will be participating in Score for the Cure this August.
Mario Dewees is generously sponsored by SERVPRO of Upper Bucks, Germantown & Pennypack / Bustleton. Interested in sponsoring a player or other Score for the Cure sponsorships? CLICK HERE to learn more about Score for the Cure sponsorship opportunities.