Episode 01: The Beginning
Noah was diagnosed with type 1 diabetes at 16 months old. As you will hear from many people in the type 1 community while going to their main doctor, Noah was misdiagnosed when we initially took him to the doctor. Diabetes has the perception of being a dirty disease. There is little sympathy from many people because the perception is that you made poor life choices and you deserve the disease. Diabetes the disease is a very complicated, and there is a ton of bad information that has feed this misconception. We will touch on a number of topics to share some of the experiences that we encountered reaching out to people suffering from this disease. We will chat about diet, which of course everyone does, but we will go into a much deeper dive, topics like can cows get diabetes, and if they are getting diabetes, how are they treated, what effect does a diabetic cow have on the diary that is produced or the meat the is now placed in the food supply. Of course we will cover organic and what does that even mean. GMO and growing methods, all the way to where and exactly how is food being grown. Ultimately the question most people have is, what am I eating and how does that affect my body.
Back to Noah the beginning of how all this started. We took Noah to his primary care physician for what we thought was a cold or flu. He was struggling to breathe and was urinating frequently. He was still eating or more accurately still drinking a lot of milk and eating baby food. The doctor checked him out and explained that is was a flu that was going round and he will shake it off in a week. After a week, he was getting worse, and started loosing his appetite. In a 10 day period we took him to the doctor 3 times and each time they told us the same thing, it was a flu that he is working out of his system. That weekend Noah was getting worse and if he wasn’t going to show any improvement by Monday, we were going to the ER. At 4:30pm we strolled into the a very full ER and the admitting Nurse called over a supervisor and she knew exactly what was going on, Noah was in Ketoacidosis. Simply put, Noah’s body wasn’t producing insulin so his body starts breaking down other things for energy producing ketones. Which is eventually leads to unconsciousness and death. About 100 people a year die from misdiagnosed type 1 diabetes that we are aware of. Many people that are suffering from Ketoacidosis pass out and then either a fall or a car accident kills them and the cause of death is accident not Type 1 Diabetes.
It took the doctors a few hours to stabilize Noah. He was so dehydrated that couldn’t find a vein to get him an IV. They had a few Nurses in there, working on poor Noah who was completely freaking out. He was so exhausted but for about 2 hours he put up a pretty impressive fight. They did find a vein on the top of his head that they were able to get him some fluids and then they started getting insulin into him. His glucose number was high, and it took what felt like forever to get him down below 200. The issue with dealing with a child is that if you give him too much insulin, you then have to give him something that will raise his glucose level about 100. “Crashing” him below 100 staves oxygen from the brain and that leads to a completely different series of medical issues. While I am in there trying to comfort my son, my wife is completely freaking out and falling apart. So medical disaster aside, now to deal with all the emotional and psychologic issues. 3 days in the ICU and Noah was making a fast recovery. All his vitals were back to normal, everything was working just fine. Now for the life altering adjustments. We had to manage his carb intake and then we had to inject him with a needle multiple times a day with insulin. Back then they didn’t have a very good monitoring system, so we had to poke his baby fingers with a needle to get a drop of blood so we can test his glucose to determine if we need to dose him. That is a complete life changer for a parent. It took Joanne a few days to get comfortable with needle injections. After 5 days at the hospital they released us with Noah. We were absolutely clueless on what had just happened and what we were going to do. We couldn’t leave him alone with a grandparent, we had to make major life changes and we knew we needed to do something. The more research we did the more confusing things became. Those early days were some of the most frustrating for us as parents. Some much confusion and bad information. Our main purpose for sharing the stories of our journey is to hopefully save you from making the mistakes we made. If we can save you from a bad experience or give you a tip, trick or hack that improves your life, then this was worth it. We hope you enjoy the journey.