From Devastation Upon Learning of Our Son’s Type 1 Diabetes Diagnosis To Discovering New Ways to Improve His Life
Our son’s Type 1 Diabetes was our lemon. Discovering and providing him with every management tool possible from the commonly used to the extreme, no matter the cost was our lemonade.
When life gives you lemons, make lemonade. It’s absolutely true. With life’s lemons, people are faced with two choices; accept the bitter, unpleasant tartness or turn that into something sweet and pleasant. We are choosing the latter.
September 4, 2014, life dumped a shipping container’s worth of lemons on us. Our oldest son, who is 5, was diagnosed with Type I Diabetes. Though we knew something was not right, and had diabetes in the back of our minds, nothing could have prepared us for this. The symptoms began showing 5-7 days prior to his diagnosis, and all of them were the classic ones, excessive thirst (polydypsia), excessive hunger (polyphagia), and excessive urination (polyuria).
My wife, Amy, took him to the pediatrician’s office, and after a blood glucose test that did not even register on their meter, the doctor calmly said, “You need to take him to the hospital now.” I was working an overtime shift at my assigned fire station while my wife was frantically trying to get in contact with me. I was on a run transporting a patient to the hospital. She finally called my captain, who then informed the hospital that my wife had an urgent message for me. I knew then that this was not going to be good.
I immediately left work, and made my way to the hospital, where our son stayed for two days. His blood sugar was almost 800mg/dL, which is off the charts high. It all made sense now. His body was starving, as the food and drink that he ingested did not make it into his cells. Instead, it remained in his blood. He would drink water to try and dilute the sugar, and would urinate all the time to try and eliminate it.
Thankfully, he never needed to go into the ICU, but he was definitely under the watchful eye of the medical staff on duty. After multiple IV bags and insulin were administered, his blood glucose levels were finally within a normal range. Of course, this was just the beginning.
We spoke with a diabetes educator throughout our stay, and her job was to introduce us to the new normal, and how to manage his condition. Thankfully, Amy is a registered nurse, and I am a firefighter/paramedic, so we were already many steps ahead of the game. However, there was so much about diabetes that we did not know, especially since we were now talking about our kid.
Every carbohydrate that he eats, whether from food or drink, needs to be counted so we can administer him the proper amount of insulin to cover those carbohydrates. There was a mathematical formula for that. On top of that, there was a mathematical formula for a correction dose. A correction fixes a high blood glucose value that is above target range. At his age, the doctors want to see him anywhere between 100-150mg/dL. As he grows and gets older these numbers will change.
Diabetes is not a “take two pills and call me in the morning” condition. It changes daily. Figuring out the correct insulin dose is trial and error, which sounds funny in the medical field. Shouldn’t there be a proper dose based on weight, or some other factor like most medications? That would make things much easier.
Given our medical knowledge, when the diagnosis first came, we both immediately went to the dark place, where you think of all the bad things that can occur as a result of having diabetes, and that people will treat him differently because of his condition. The best way to combat that is to not hide the fact that he is a diabetic. If you educate people about the condition early on, they realize that diabetics are normal people, who happen to have a condition that needs to be managed. He has shared so much with his kindergarten class, and all of his classmates are interested in what he has to do to keep himself healthy.
Lots of people have diabetes, including famous athletes, actors, musicians, etc. It did not stop them from achieving success. There is no reason why it should stop him.
We are now three months post diagnosis, and quite honestly, it still sucks, and it always will. I am not saying this to be negative. I am saying it because any parent who has a kid with a medical condition would agree. That being said, we have made great strides at getting his condition managed. We have the latest and greatest management tools, such as a CGM (continuous glucose monitor), which is a small sensor that detects and updates blood glucose levels every 5 minutes. We became members of an online chat room via a popular social media site called CGM In the Cloud. Through this, we learned how to set up Nightscout, which allows us to remotely monitor his glucose levels. It has been a complete game changer, and has allowed us to stay well on top of any fluctuations. He is also now on an insulin pump, which means not having to take 6 to 8 injections everyday. The pump allows us such precise dosing, and essentially gives him a “functioning” pancreas again. Lastly, though we won’t take delivery until February 2015, we purchased a diabetic alert service dog that will accompany him anywhere he goes. This is another tool in the toolbox, and in our opinion, better than any medical device on the market. These dogs can detect changes in the body’s chemical composition when there is a major swing in blood glucose, either high or low. They are trained to alert the handler to take action before the levels are at a critically dangerous level. If that isn’t turning lemons into lemonade, I don’t know what is.
As of now, Type I Diabetes is a life long condition, as there is no cure. Much progress has been made, and we are hopeful that within his lifetime he will be able to say, “I used to have diabetes.”