Saturday, November 5, 2016

Bella, 9 (Anchorage, AK) | Type 1 Diabetes

BELLA, 9 (Anchorage, AK) | Type 1 Diabetes
Written by her mother, Bre 
Photographed by Dolce Vita Photography 
November 17, 2013 I awoke prepared for a relaxing Sunday. We had furniture shopping to do among other normal Sunday errands. Bella hadn’t been feeling/acting right for about 5 days. Nothing too terribly crazy…a little grumpy…eating me out of house and home…rarely complaining of stomach pains and drinking milk like it was going out of style. The increase in milk consumption had me a bit alarmed. My father had been a type 2 diabetic so I was familiar with the signs of diabetes. But this was different. That morning when I looked at her I could tell she had lost weight….rapidly. Her eyes had dark circles around them and she didn’t seem very alert. We headed out for the furniture store as I tossed around the idea of a sick Sunday pediatrician call in my head. While we were at the furniture store Bella found a bed that was set up and fell asleep on it…it was only 10:30am…this really set my alarms off. She was hard to wake and didn’t seem to be very aware of what was going on. Unbeknownst to me a worker at the furniture store had given Bella a cup of soda while we were paying for our furniture…pure fast acting sugar. Once we were in our truck I immediately called our pediatrician to let them know we were on our way….I knew there was something very wrong and I feared diabetes or cancer.


 

After dropping the boys off at home Bella and I headed to Providence. I remember it was a beautiful winter day and I could hear my own heart beat I was so nervous. She slept in my backseat. I carried her into the office and alerted the front staff of my suspicions. They immediately wanted a urine sample. My 6 year old happily gave them a sample and laid on the exam table. Shortly later a pediatrician emerged and confirmed she was “spilling” large amounts of glucose into her urine and also had large ketones (ketones are produced when there is not enough insulin to break down sugar in the bloodstream…when the body cannot break down the sugar it turns to fat and muscle). She instructed us to head for the children’s floor of the hospital….she would have to be admit and it need to be done quickly. Bella cried and I carried her…she was so weak that walking was not an option. The staff met us at the entrance to the children’s floor. What played out over the next few hours was what nightmares are made of. Bella’s first finger stick was too high for the meter to read (over 600 blood sugar)…so they wanted an IV draw for a lab sample. She was so combative and sick she fought like her life depended on it…finally I had to crawl behind her and bear hug her for the nurses to place an IV and retain the blood they needed. When the results came back I can still remember the nurse standing in the doorway saying “this is one for the books” she’s 1200. There was no reason in this world for Bella still to be conscious let alone talking and fighting like she was. They began slowly bringing her down with small doses of insulin and IV fluids, bringing her down too quickly could result in massive brain hemorrhaging and ultimately death. I had heard of type 1 diabetes but I truly knew very little about it. Over the next three days we were inundated with information about type 1 and what she would need to survive the rest of her life…it was overwhelming to say the least. She was released to us two days before Thanksgiving.

 
As we all know….carbs are a large part of most people’s Thanksgiving meals. I made all the dishes by scratch that year and figured out per serving how many carbs there were…we ate late….very late. Life wasn’t simple anymore. Everything was attached to numbers…and constant worry. How high was she? High sugars can lead to lifelong problems and internal organ damage. Let alone headaches, grumpiness, increased urination/drinking, etc. Or maybe she’s going to low? Low blood sugars can be very dangerous if not fatal….seizures and comas float through your head. At minimum lows can trigger stomach pain, weakness, lack of control of your extremities, and lots of crying. Every day is a new day….what worked the day before might not work today. And everything…I do mean EVERYTHING…effects blood sugars. Emotions, weather, sleep patterns, hormones, growth spurts, exercise, food, etc. With the diagnosis of Type 1 your sleep also goes out the window. How does one sleep when your child could drop dangerously low during the night and die? You now will spend your nights creeping into their bedroom to poke fingers and check blood sugars. Some nights it may be once, others may be an all night affair. Bella is almost three years into this disease. Each year brings an average of 2,800 finger sticks, 130 insulin pump site changes, and 36 CGM (continuous glucose monitor) changes. As a parent it’s painful to watch your child struggle on a daily basis with an invisible illness. Bella appears normal to on the outside (unless you catch her when she’s low). But her scars run deep. The daily roller coaster of unpredictable sugars take their toll.  

Type 1 diabetes can strike at any time to anyone regardless of age, sex, or race. It is the result of your autoimmune system attacking your pancreas and killing the insulin producing beta cells. There is no known cause and no cure. Overeating, poor eating, too much sugar, being overweight are just some of the stereotypes Type 1’s are hit with…all of these have nothing to do with the disease. Insulin is our lifeline not cure. Without Insulin Type 1 diabetics will die. Warning signs of type 1 diabetes that everyone should be aware of are extreme thirst, frequent urination, lethargy, weight loss, increased appetite, vomiting, stomach pain, fruity/sweet smelling breath, or heavy breathing. The symptoms can easily be misdiagnosed as simply a stomach virus or common flu. If you or a loved one are experiencing any number of these symptoms (doesn’t have to be all) please ask your doctor for a simple blood/urine sugar check…you may save a life.  Even with our daily struggles Bella is still a normal, happy 9 year old girl. She simply wants people to know that diabetes may be a part of her life but it doesn’t control it or define it.  We seek a cure and we battle each day…..She is my warrior kid! 


Resources :
www.jdrf.org    Juvenile Diabetes Research Foundation
http://www.t1dmodsquad.org/ Type 1 parent group

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