Boy what a difference 6 months makes.
So, here's a few facts to make everyone a little more knowledgeable about diabetes:
- Emma has Type 1 Diabetes. Type 1 diabetes is when your pancreas stops producing insulin. It can be a genetic disposition, it can be caused by a virus. They aren't exactly sure. What they do know that it isn't caused by obesity, lack of exercise, or too much sugar (those are contributing factors to Type 2 Diabetes)
- For a normal person, their fasting blood sugar level is usually below 100 and their typical blood sugar 2 hours after eating is usually below 150. For Emma, we target to keep her blood sugar between 80 and 180 but we are often happy as long as it stays in the low 200s.
- Until a cure is found, Emma will be dependent on insulin medication. Every day. All day. Without insulin, her body cannot process the sugar that it ingests. Without insulin, her blood sugar levels will increase and her body will basically start feeding on itself and she will go into a state called "Ketoacidosis" which is a very dangerous and coma-inducing state.
- Because we give her "artificial" insulin instead of naturally produced insulin, her body doesn't regulate its production and absorption like it would if she had a pancreas. That means sometimes we can give her too much insulin for what's going on in her body and she'll go low. Lows are dangerous and cause unconsciousness and seizures. We treat lows with juice and sugar in an attempt to get her back into range as quickly as possible.
- Emma currently cannot tell for herself whether her sugar is low or high, so we have to do an enormous number of finger sticks to check it. She typically gets about 8 finger sticks a day (7:30am, 11am, noon, 3pm, 6pm, 9:30pm, midnight, 2am) with additional ones in between if she is acting unusual or something just doesn't seem right. It is clearly an art form to try and know when to check and treat her blood sugar levels.
- Emma currently gets her insulin through injections - 4-6 times a day. She is a trooper about these injections, and rarely makes a peep as she gets them. Due to medical advancements in the past 5 years, she is currently on a wonderful 24-hour injection that gives her a baseline of insulin (like her pancreas would if it functioned). Then we only need to give her an injection based on what she eats. She can eat what she wants when she wants as long as she gets an injection.
- In just a few days, Emma's injections will be replaced by an insulin pump. This wonderful invention is the closest thing to an artificial pancreas right now. This pump carries a vial of insulin that is slowly injected into her body through an infusion set all day and all night. It has programmable doses for her baseline insulin and then settings and calculations that we can use to give her insulin based on what she eats. This pump is about the size of a cell phone that can easily be clipped on a belt or tucked in a pouch, with small tubing attached to her infusion set.
- The long-term effects of untreated / unmanaged diabetes can be pretty bad, including blindness, loss of feeling in extremities, amputation, etc. Even managed, her risk of heart disease is higher than that of a normal human. And pregnancies will be more difficult and high risk for her (yes, I know she's only 2). But, things are so much better than they were even 10 years ago and her chances for a more normal life are better than ever.
This information isn't given to scare anyone or upset anyone, but just to educate readers on the facts about diabetes. What's hard is to look at your child and see the child, and not the disease. I still find myself looking at her and thinking "I wonder what her blood sugar is" instead of wondering if she's happy or what she wants to play. After your mind is inundated with this disease, its hard to get it off your mind. But while we expect this pump start to be difficult, the long run will make it easier for our entire family to manage this disease. Then maybe we can go back to just dealing with the typical "2 year old challenges": potty training, tantrums, business, etc.