Wednesday, September 22, 2010

One Sweet Mia

Mia was born on August 3, 2007. On December 3, 2008 she was diagnosed with Type I Diabetes, her blood sugar in the 580s. Our lives have never been the same.

As new parents we went from typically worrying about teething, bumps and bruises to suddenly panicking about giving multiple daily insulin injections, severe low blood sugar episodes and diabetic ketoacidosis, all with a toddler, a 16-month old.

And one can only imagine how she felt, this delicate, little flower, unaware of the ugly battle raging within her. Out of nowhere her immune system attacked itself, shut down her pancreas and all of its insulin production forever, sending her heart and kidneys into distress, stretching all of our emotions to their limits. And we have no idea why. How could this happen to someone so young? We were told by Mia's endocrinologist that she was his youngest T1 patient. Those words still haunt me everyday. I'm still trying to wrap my mind around what that means for her long term.

No, she will never outgrow it. There is NO CURE. Type 1 diabetes (or juvenile diabetes) is an unpreventable and unpredictable autoimmune disorder. T1's only make up 5 to 10 percent of diabetics. Yes it can be managed, but it's often so incredibly difficult to control, many times there is no rhyme or reason for blood sugar fluctuations. T1 is one of the most widely misconceived and confused diseases of our time. Most people think it can be controlled with diet and exercise, or that it's caused by a lack there of. Not true. Most people think T1 diabetics simply need to avoid sugar, take a little insulin and problem solved. Unfortunately not true.

Mia gets her fingers lanced at the very least 10 times a day. It hurts but she obliges every time. She wears a Medtronic Revel insulin pump (since March), inserted beneath the skin on her bottom by a catheter we change every three days. The infusion needle packs quite the punch, a lingering sting - we know because Pete and I wore one with saline during pump training. So you can only imagine the hysterics in our household on site change days, every third day having to restrain a terrified toddler long enough to get the needle in correctly. If she moves it goes in crooked, there is blood everywhere and yes, it has to be done over again. For a short time we did the site changes while she slept, but eventually she caught onto us and it would take forever before we could calm her back down to sleep.

Yet the insulin pump is much better than what we used to do, the multiple daily injections. Four shots a day - trying to draw up her Lantus and Novolog accurately and pinning her down on our lap at home, at a park, in a restaurant - the looks strangers would give. At least we are only down to the one ugly needle every 3 days. Unless of course, there is an occlusion in the tubing, a faulty set, etc. Then we change the site as much as needed and supplement with the injections until we're certain the insulin is being delivered and she's not going to go into DKA.

Because of all the insulin T1 diabetics are in constant danger of low blood sugar episodes (below 80). Low blood sugar occurs when not enough carbs are consumed and too much insulin is given or there is more physical activity than usual. Lows are sudden and serious, leading to seizures, coma or death if severe. And it's all too easy to confuse normal toddler behavior with symptoms of a low. I can't tell you how many times I've pulled over on the side of the road, or at Target, to check blood sugar because of a Mia fit. And the Mia fits are almost always blood sugar related. The lowest reading we've ever seen on our meter in 32. Lows are treated with carbohydrate-heavy juices, candy, glucose gels or a single intimidating glucagon injection.

Nothing will move you faster as a parent than low blood sugar. Lows scare the living shit out of us. Back in June we were on vacation in Portland, OR, three months after we began pumping. For whatever reason (climate, altitude, the tilt of the Earth's axis), Mia's insulin sensitivity was way off, not what we were used to at home. So the boluses we'd normally give would drop her hard out west. Night 2 she had a glucose reading of 309, so we gave her a correction based on the midnight basal rate she was set to receive. Within 40 minutes she was convulsing in our bed, too severe to even get a reading.

We suspended the pump, placed her on the ground, every muscle in her body seizing, the only word she could manage was STOP, over and over and over. I will never forget how she looked, how she sounded. We massaged glucose gel into her cheeks, maple syrup. Looking back we know we should have just used the glucagon needle, but we'd never had a low that intense before, never seen anything like it and never want to ever again. I cried for days. And we were on vacation. I kept thinking how her brain was short circuiting, how we almost lost her. And how no matter what, whether we are on vacation or not, diabetes WILL ALWAYS BE WITH US. We will always be on call. We can never relax. We set our alarms EVERY NIGHT to check Mia's glucose while she sleeps. There is no uninterrupted sleep for a T1 parent. Many nights she is low and we treat with juice or Skittles at 3 am. Just this past year a teen died in his sleep from a low blood sugar episode. His mom tried to wake him for school in the morning, but he was gone. He was 14. Mia is 3. We will never retire our baby monitor.

At the other end of the diabetes spectrum are blood sugar highs. Highs occur when too many carbs are eaten, not enough insulin is given, or if stress or illness (cold, flu, chickenpox) is present. Highs are gradual and indicate a serious medical condition - an accumulation of ketones. Ketones are acids that build up in the blood and appear in the urine when there's not enough insulin in the body. They are poison to diabetics and can cause diabetic ketoacidosis (DKA can lead to swelling of the brain/coma or death). Being on the pump we run the risk of faulty infusion sets which can block insulin delivery.

Just this summer Mia woke one morning completely lethargic, vomiting and unable to hold down food. The meter was reading HI (blood sugars over 500 simply appear as HI) and she had a large amount of ketones present. For glucose numbers over 240 we immediately do a second finger stick with a different meter to check ketones. It took until early afternoon (and several calls to the endo) to get her blood sugar under control, ketones down and a little food in her system to prevent the pendulum from swinging in the other direction. We had one foot out the door to the ER. All of this occurred from a bad infusion set. The tubing was not allowing the insulin to circulate. And that will just happen sometimes. So you supplement with injections, lots of water, lots of hugs, Boston Terrier kisses and Dora the Explorer. And you try and stay as calm as you possibly (insert expletive) can.

We count EVERY SINGLE CARB she eats. Carbohydrates convert to sugar within the body. So anything she eats other than protein (meats, eggs, cheeses) will effect her blood sugar. Milk does hideous things to her glucose, so we go with soy now to avoid crazy mid-morning highs. We use something called a Salter Scale to precisely calculate the amount of carbs in foods. It stores hundreds of food items - blueberries, carrots, pastas, rice, tortilla chips, etc and computes the amounts being weighed. We look at every nutrition label and carry carb count books as back up in our bag. There's even an iPhone app for this. Eating out can get tricky. We have to use our best judgement to guesstimate carb counts, and of course be prepared to make insulin corrections later for spikes.

Thanks of the pump Mia can pretty much eat what she wants, when she wants, as long as it's healthy and balanced. And we try not to deprive her of certain treats too often. If kids are eating cupcakes or pizza at a party we're not going to hand her a stalk of celery and say sucks to be you. Instead we scrape off the icing and give her insulin to cover the rest. I've heard of diabetic kids instigating low blood sugars just to get candy or sweets. So we're trying to avoid that insanity by letting her indulge once in a while. We don't keep junk food in the home, and for the most part we all eat healthy, nutritious meals (as much as you can with a toddler). Whatever I'm eating she can eat. And Kai will eat the same. There is no special treatment.

Type 1 diabetes is an invisible chronic illness. You can't tell just by looking at Mia that her body is in constant conflict. But if you look a little closer you'll see the specks of broken capillaries on her fingertips, a drop or two of blood on her clothes, her sheets, a smudge of it on her face as she brushes the hair from her cheek. If you look a little closer you'll see the swell of the pump pack beneath her clothes and a sliver of the tubing (her life line) peaking out from her princess dress. If you look a little closer you might see the pock marks and bruises on her bottom from infusion sites and injections. And you'll see the bags under a Type 1 parent's eyes, the relentless worry, the unavoidable distraction. But we aren't asking for pity, just compassion for our kid and an understanding of where our priorities lie.

Diabetes does not define my child or hold her back whatsoever. We want her to experience everything life has to offer, just the same as any other child. Mia is too young still to know what is going on, why she goes through what she goes through every day. But she is starting to ask questions (Am I sick? Am I sick?) and we know inevitably we are going to have to explain this to her as delicately as possible. When we check her blood sugar, we simply tell her we are checking to see how sweet she is.

The next several years are going to be very hard emotionally. And I've heard the teenage years are an absolute nightmare, between puberty effecting blood sugar, and teens being defiant, thinking they are immortal and wanting to fit in with everybody else. We'll cross that bridge when we get there. We will do EVERYTHING and ANYTHING we can to promise our daughter a long, healthy, productive and happy life. Diabetes research has come a long way, and while I don't think there will ever be a cure, I do think we will see much better ways to manage and influence blood sugars.

Just a few years ago I was the most people I spoke of earlier. I'm embarrassed to admit that even with a Type 1 mother diagnosed at 9 and brother diagnosed Type 1 later at 18, I really had no clue of how serious, and how miserable, diabetes is. My mom always hid her disease from us, rarely complained and carried on as normal. She died at 48, just 15 years older than I am now, with diabetes being a big factor. How am I supposed to explain that to Mia? I don't even know. I don't even want to think about it.

I am no longer most people. I am now Sally Field in Steel Magnolias, which I will never, ever watch again. I am a Type 1 Mom. And Mia is my beautiful, incredibly sweet child. I will not let diabetes take her from me. I will not let it win.

I love you Mia, Kai and Pete.


sarasarasara said...

oh, marisa...even though e's disease is different than mia's, i totally get where you are coming from as a parent.

that girls knows you love her. and she is so incredibly lucky to have such proactive and involved parents.


David Nuffer said...

This is a great write-up that really gives the message. Sharing will help a lot of us understand better.

Amy said...

Wow. I haven't cried in a couple of days about diabetes ...... now I am in a puddle.

Beautiful words, my dear. Thank you.

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