Wednesday, November 22, 2017

Doors and Keys

Thank you for following me over here from Facebook. I didn't feel like it would be appropriate to post this information in the same stream as political slams and crazy cat videos.

One of the difficult parts about having a child with type 1 diabetes is that so many people don't know much about it. So here is my attempt to answer some of the questions we are asked.

But first, let's define type 1 diabetes.
Type 1 diabetes (different from type 2) is when the body's immune system attacks it's own pancreas. The immune system mistakenly sees the cells in the pancreas as foreign, and destroys them.

The difference between your body and Ella's body. 
When you eat carbohydrates, those sugars are carried by your bloodstream to all the cells in your body to fuel those cells. Imagine all those cells having locked doors so that the sugar cannot get in. Your pancreas produces lots of tiny little keys (called insulin) that unlock the cell doors to allow the sugar into the cells.

When Ella eats carbohydrates, those sugars are carried by her bloodstream to all the cells in her body. But unlike you, her body is not producing keys (insulin) to unlock the cell doors to allow the sugars in. Her key maker has been murdered. Her body does not have a way to get the sugars into her cells so that she can use them. Those sugars just build up in her blood. So we have to inject keys (insulin) into her so that her body can use those sugars.

So, essentially, type 1 diabetes is all about matching up just the right amount of insulin with the amount of carbs Ella eats. We have to do the math that Ella's pancreas used to do before it was destroyed. Sounds easy peasy. (Every parent of a T1D who's reading this is mockingly laughing and sighing at this comment right now.)

And now, for your questions-

Isn't Ella too young to develop diabetes?
No. Most children who develop type 1 diabetes (T1D) do so around the preteen years. (Ella is 9.) However, there are toddlers and adults that develop it as well.

When is she expected to outgrow T1D?
Type 1 diabetes will not go away. It is for life. There is currently no known cure.

What caused Ella's diabetes?
There is no known cause. She was genetically predisposed to develop T1D. There is nothing we could have done to prevent it.

How long has Ella had T1D?
Her endocrinologist believes that Ella's pancreas began dying about a year ago. (Summer/fall of 2016). However, she was not diagnosed with type 1 diabetes until August of 2017.

I see people with type 1 diabetes eating sugary desserts. How can they do that if they have diabetes?
Type 1 diabetes is not a sugar allergy. Ella needs sugar/carbohydrates just as you do. But, unlike you, she lacks a way to use those sugars because her insulin-producing pancreas cells have been destroyed. So we give her insulin so that her body can use the sugars.

How many time a day does Ella have to test her blood sugar?
She tests her blood sugar before every meal and whenever she's feeling like her blood sugar is too low and needs to be raised. (She knows how to test and raise her blood sugar properly on her own, and does a great job!) She also gets tested 1-2 times each night to make sure she's not dropping too low while she sleeps. So, her blood sugar is checked about 4-7 times a day.

How many shots does Ella get each day?
On an average day she gets 4 shots. Shots of fast acting insulin are needed with every meal or snack that is over 15 grams of carbs so that her body can turn the sugars into energy. She also gets a slow acting, long lasting insulin each morning. And she occasionally gets a shot in the middle of the night if her blood sugar is too high.

Is Ella able to manage her insulin herself?
No. Counting carbs is trickier than it sounds, and there is a good bit of math involved with calculating a proper dose of insulin. However, we just got cleared to use insulin pens (as opposed to syringes) which means that Ella is able to measure and administer the insulin herself (with supervision) after I do the math. It's a small step in the direction of one day managing her diabetes on her own. Although, she is quickly memorizing carb counts on candy items in her halloween bucket :)

She'll get a pump eventually. Right? Then things will be easier. Right?
Yes and no. She is currently not a candidate for a pump because the smallest amount of insulin that a pump can dispense is too much for Ella's body. Right now she is super sensitive to insulin. In the future she might be able to benefit from a pump, but it will only make the easiest part of having diabetes a little bit easier. We'll still have to do the math and decide what a dose should look like. And using a pump will come with it's own maintenance issues. Right now Ella is enjoying not being attached to any equipment. She can jump into the shower or pool without thinking about disconnecting a pump. Or roll across the floor without stuff attached to her.

What things affect Ella's blood sugar?
Are you sure you want to hear the answer? Okay then. Things that affect her blood sugar include (but are not limited to) stress, exercise, hormones, illness, time of day, not enough sleep, dehydration, type of food, inconsistent schedule, overdosing for a meal, underdosing for a meal, incorrect carb counting, adrenaline, insulin that has been too cold, insulin that's been too warm, insulin that has been open for too long, bla bla bla.......

Are there foods that Ella has to avoid?
No! She is allowed to eat ANYTHING. Even her favorite food in the whole world- donuts! I just have to see it first to match it with insulin. However, most people with T1D have certain foods that raise their blood sugar a lot faster than the insulin can deal with it, causing the person to not feel well for a bit while the insulin catches up with carbs. So, even though Ella can eat anything, she might choose to avoid certain things that raise her glucose super stinkin' fast.

So what does type 1 diabetes look like in your daily life?
Wow, that's a huge question. The daily goal with managing T1D is keeping Ella's blood sugar within a safe range, using insulin to lower it, and sugar to raise it. When leaving the house, Ella makes sure to have her bag packed with her blood sugar monitor, insulin, candy, and an emergency glucagon kit (sort of like an EpiPen for diabetics). I keep a log of everything Ella eats, record all her blood sugars, and when & how much insulin she gets. My kitchen scale is one of my new best friends along with carb counting apps on my phone. Daily life involves constantly reassessing an insulin math formula that changes weekly, sometimes daily depending on Ella's activity levels or other things going on in her body. 

Why work so hard to keep her blood sugar within range? So she feels good and can function. There are significant consequences to letting her get too low or too high. Some of those consequences are life-threatening. We are used to taking breaks from schoolwork to focus on getting blood sugars under control. At times daily life means having a tired mommy or a tired Ella because of having to treat highs/lows in the middle of the night. I know it sounds like a lot, but it's all become fairly routine for us now.

How is Ella dealing with this emotionally? Is she aware that T1D is for life?
She is aware that this is for life. She's tired of not feeling well as her insulin needs are currently changing fairly quickly, but overall is handling things quite well. We don't feel sorry for ourselves, and realize that these bodies are temporary. Our chief goals in life have not changed because of Ella's diagnosis. I really don't know how parents that do not put their hope in the resurrection of Jesus deal with it. If your goal is to have the best life possible, and for your kids to have happy, easy lives, then a diagnosis like this would be devastating. 

I listen to a podcast aimed at parents of children with T1D and, while it provides good, practical info, it radiates hopelessness. It is dark and sad and full of despair as the host explains how he tries so hard to give his daughter a "normal" life. If I someday find myself suddenly blessed with effective verbal skills, I would like to create a podcast for parents of children with special needs, and give them encouragement and hope in the light of what God has done for us. Dealing with diabetes is hard. I want to share God's grace with those parents so they can find some emotional rest. 

Anyhow, all this is to say that we would be a lot worse off emotionally if it weren't for the amazing grace of God.

Do you have lots of doctor's appointments now?
Nope. We see the diabetes doctor about every three months. But I have easy access to help any day or night when I need it. I speak with a nurse by phone a couple times a week to discuss blood sugar numbers and how insulin doses are affecting Ella. It brings me much peace of mind being able to bounce things off a nurse if I'm not quite sure about something.

Are you trying to put your other children in a traditional school so that you have more time dedicated to Ella and her needs?
No. We are actually keeping up with our school work surprisingly well this year! Much of life has been quite enjoyable since Ella's diagnosis. Perhaps it seems that way because I'm quick to notice and celebrate anything that is going well because I know how quickly things can change.

What have you learned through/during all this? (This is actually my question to myself.)
I have been learning that managing diabetes is not what defines me or my child. Our identity is in Jesus Christ. I've learned to not ever expect a schedule to be easily kept. Be flexible. I've learned to celebrate the little things that go well. And I continue to learn to not be quick to judge others. When I see a mother in the store who seems to have no control over her child, I try to remember that it may not have anything to do with that parent/child relationship. They might simply be trying to get some groceries home while struggling with a blood sugar in the 300s. 

What can other people do to help us?
Hmm. Invent a magic pill that will make me feel like I got a straight, full night of sleep even though I had to get up twice to check Ella's blood sugar? I can't think of anything anyone else can do, but am very thankful that people want to help.

And the question I'm asked most often-

How did we find out that Ella is diabetic?
Ella got really sick while we were at Family Camp at the beginning of August 2017. She stopped talking, eating, playing, and laughing. She got very thin. Doing things that used too be easy for her, like riding her bike, became overwhelmingly difficult. 

Worried about Ella, we left camp a bit early so we could get her in to see the doctor before the weekend. We figured it was just a virus that would take some time to pass, but thought it best to get her checked out anyhow. Before scheduling a doctor appointment, I googled her symptoms (because the internet knows everything and is always accurate, right?) and type 1 diabetes was one of the things that popped up. I ran down the long list of symptoms of a type 1 diabetic and Ella had almost every symptom. Some of the symptoms were actually things that I had been noticing for months (including while we were living in China) but hadn't known what had been causing them. We tried to stay calm because, well, it was medical info that I'd just found on the internet. 

When I called the doctor to make an appointment I requested that Ella be tested for type 1 diabetes. The test results were super quick. The doctor knew Ella was diabetic before he even saw her. He called the ER to let them know he was sending us straight there. Ella's blood sugar was not necessarily at a super dangerous level. The huge concern was something called ketoacidosis. Since Ella's body had no way to use the sugars she was eating, her poor little body was burning all her fat. When the body breaks down large amounts of fat, the result is a buildup of acid in the blood. High amounts can be life-threatening.

We spent a night in ICU, recovering from the ketoacidosis, then were moved to another floor where Ella got to start eating again. That's where our intensive crash course on managing T1D began. I am thankful for the wonderful teams at UW Children's Hospital that helped us along the way, and those that continue to do so. I'm thankful for all our friends and family that care about us and are praying for us, and for friends that visited Ella in the hospital! And I am so happy to see Ella smiling again!

(A pretty smiling peacock for Halloween.)