In honor of World Diabetes Day - Here is Nate's Story -
On Monday the 14th of September I noticed that Nate was pretty thirsty all day. He cried a little bit more than usual and would stand at the fridge and point until I would get him a drink. I have to tell you, I thought he was pretty darn smart! I mean really – he’s only 14-months old and he knows what he wants and where to get it!
That night he cried on and off during the night which was very unusual for him. He seemed thirsty again so my husband gave him a sippy cup of water. Nate stopped crying, drank the water and went back to sleep. When he woke up again he was soaked! I mean diaper soaked, jammies soaked, sheets soaked – everything soaked but still he was thirsty. More water and more soaking, more water, more soaking . . . you get the idea.
By Wednesday I was searching the internet for “excessive thirst in toddlers” – only 1 thing came up. Nope, that can’t be it. I put it in the back of my head and continued to monitor the situation.
On Thursday Nate went to his once a week children’s day out program which he was still not too fond of at that point. He stayed all day which was surprising to me because I just had a feeling I would be called to pick him up since he was so upset when I dropped him off. When I arrived to pick him up at 2:00 I noticed that they had changed his clothes and when I asked why they told me he seemed excessively thirsty and had soaked through his diaper. It hit me like a ton of bricks at that moment and yet somehow I just could not believe that it could be.
I went ahead and called our pediatrician and made an appointment for that afternoon. I rushed him over and listed off his symptoms to the nurse. She was very comforting and said the doctor would be in shortly. Our pediatrician, who is also a close family friend, was not in. We were seeing a new doctor in the practice, which made me a little nervous. She listened to his symptoms as I once again rattled them off and she ASSURED me that it was not diabetes because he was just too young and there was no family history. As you can imagine, I so desperately wanted to believe her! Nate had a cough with some congestion so she thought they should check for strep and go from there. Okay, I think I knew in the back of my mind that it was totally not strep but oh how I wanted it to be!
The strep test came back negative and she really wanted to send me on my way. She said Nate just had some virus that was making him thirsty because of the congestion. I knew – I knew the way only a mom can know that I could not leave that office. I insisted that they check him for diabetes - - - if it is an easy test that we can do here in the office I would feel better just ruling it out is what I think I said but you would have thought that I had said it in Chinese! Long story short, the nurse tested his blood glucose level, turned around, walked out without a word. When the doctor came back in I remember I wanted to run away – I could see the look in her eyes – I wanted to grab Nate and run away from the reality that was about to come. I should have run! She told me that Nate did indeed have diabetes, they needed to run a urine test to check for ketones, and that we would be sent straight to Children’s Medical Center of Dallas to be admitted into the Endocrinology unit. It all makes sense now but at the time I had no idea what a ketone was or what the heck endocrinology meant??!!
My cell phone was dead; I was alone with my son so I could not break down and cry. I just stood there trying to wrap my brain around what they were telling me. I borrowed the office phone to try and call my husband but I was so completely stunned that I could not even remember his phone number! I just stood there silently screaming and crying on the inside!
Once I left there the nightmare began . . .
We had to make arrangements for our girls to be taken care of while we were gone, pack bags, and make phone calls all while still spinning from being told that our son has diabetes. He looked so perfect and healthy!
We arrived at CMC and checked into the ER at the beginning of the worst flu season EVER. It was packed! We got checked in and waited and waited and waited until a nurse came in that barely spoke English, I seriously could not understand one word he was saying so we asked for another nurse to come and assist. So, together these 2 male nurses poked and prodded our son over and over again. They checked his bgl, they took blood from his arm, and they tried to put in a catheter until my husband just about lost it and made them stop. Nate was screaming and crying so terribly that I had to leave the room. It took my husband and both nurses to hold him down to get the IV in his little arm.
From there we were sent up to the endocrinology floor where we were greeted by some very friendly faces. The nurses there were so wonderful. I finally broke down when the doctor came in and the nurses were right there for me. The next few days were just a blur – so many doctors, nurses, educators, & dieticians giving us so much information. Somehow we survived the hospital stay and learned how to take care of our son before they allowed us to leave 3 days later. I believe they called it “survival mode”. I believe that is where we are still. Each day it becomes more of a routine and each day I can see that I am starting to “get it” a little bit more.
And yes, I have figured out what a ketone is and what endocrinology is and I can even spell it right (almost) every time. I have also figured out that while this disease is cruel, it is not prejudiced. . . Nate is not the only tiny tot to join in the fight for a cure . . . it strikes children younger than 14 months and it strikes young adults and all ages in between. It strikes all classes and all races and the numbers are increasing every day.
My cause is Type 1 Diabetes. Nate’s cause is Type 1 Diabetes . . . we will fight the disease and will hope for a cure in his lifetime. As I have repeatedly said, we will not let diabetes define him. Diabetes will be life altering but not life defining for him. Nate is a normal, beautiful little boy who has diabetes. . .
Here are a few things that I would like people to know about Type 1 Diabetes. I am by no means an expert but I am learning more and more about the disease each day. I have also learned that people in our community need to be educated about TYPE 1 DIABETES -
Type 1 diabetes is an autoimmune disease in which the body's immune system attacks a child's pancreas islet cells that produce insulin. Without insulin, the body cannot use food for fuel. The person will die without insulin, there is no cure, and it is forever. 40 kids will be diagnosed today.
- Taking insulin does not cure diabetes. Insulin keeps people with type 1 diabetes alive, but does not cure the disease. While progress toward finding a cure has been substantial, there is still no cure for diabetes.
- Type 1 is not caused by obesity or eating too much sugar. While obesity has been identified as one of the “triggers” for type 2 diabetes, it has no relation to the cause of type 1 diabetes. Scientists do not yet know exactly what causes type 1diabetes, but they believe that both genetic and environmental factors are involved. Eating too much sugar is not a factor.
- Type 1 is not contagious.
- You can eat sugar and carbohydrates when you have Type 1
But, like for every other person in the world, balance and moderation are key. We all need carbs for energy and sweet treats sure are nice! T1 diabetics are not doomed to a life in artificial sweetener purgatory; they just need to keep the refined sugars to a minimum.
- Math is your friend!! Math is not my forte but my son's well being depends on it. When you have type 1, you are always calculating - carbs, correction factors, insulin to carb ratios. Being a T1 or a parent of one requires making friends with your calculator and your left brain.
- Not being alert is not an option -
When you wake up in the morning all bleary eyed because you have a toddler who likes to go to bed late and get up early, you might put the coffee water on to boil first but then its time to get the insulin out of the fridge. You need to warm it up, rub the sleep out of your eyes, and make sure you can see clearly because you better get those morning doses of insulin correct. Staring at a syringe with tiny numbers and lines on it before coffee is always a challenge.
- Getting out of the house takes a little more effort.
You can't just throw on your coat and head out the door anymore. Don't forget your insulin, syringes, snacks, swabs, test strips, glucagon, and juice/glucose tabs/cake gel. Better make sure you have some free food snacks and some with carbs while you are at it.
- With strict adherence to a specific diet and exercise plan, and multiple insulin injections each day based on careful monitoring of blood sugar levels, a person with type 1diabetes can gain some control over his or her blood sugar levels. While the above strategy is the most effective way to achieve and maintain tight control of blood sugar levels, optimal blood sugar control can be very difficult for some patients. Many factors, including stress, hormone changes, periods of growth, and illness can easily cause blood sugar to swing out of control. Teenagers in particular might be susceptible to this problem, as their bodies go through many changes during adolescence. Also, some people with type 1 diabetes find that even though they strive for tight control and follow their meal plan and insulin schedule, they still experience rapid fluctuations in their blood glucose. Those fluctuations do not mean the person with diabetes has done anything wrong. (See jdrf.org)
Diabetes kills more people than breast cancer and AIDS combined in the