Thursday, February 28, 2013

Three Year Diaversary - What Three Years Can Do!

A lot can happen in 3 years.... In  years you go from thinking you have a healthy 6 year old little boy, to being told he has Type 1 diabetes, to watching him suffer in DKA unconscious all the while you think he is slipping away. Just when you think you are starting to learn the ins and outs of this new "Type 1 Diabetes World" he passes out from a low blood sugar and bumps his head, only to be rushed off once again via ambulance to Children's hospital. And when again you think you've got it covered he suffers the scariest seizure you've ever witnessed in front of you to be flown by helicopter back again to Children's hospital. This trip though was bittersweet, it was in April of 2010, and a new D mom like myself and I had connected on Facebook, and she helped keep me company while sitting in the hospital with Clifford and waiting for Chad to come. That mom has moved on to become family to me. (Diane, you know it's you ;) ). Moving forward from my initial contact with Diane, she helped to introduce me to many more wonderful people that knew what was going on, and we were welcomed into the DOC (Diabetic online community). If you are reading this and still are unsure what the signs and symptoms of type 1 diabetes are, take a look here, it could very well save someones life! Knowledge is power!

These events haven't even covered the first year of living with Diabetes for Clifford. These events both happened within 2-6 months of being dx'd. Finally though after that was all said and done, his doctors got his 'sliding scale' which I've come to detest figured out better. A sliding scale is basically to me a guess of how much insulin to give them based on their blood sugar at the time. It doesn't take into account the carbs they are eating, or anything. So as you can see it's basically just a 'start' into learning the diabetes lingo, and treatment plans, and honestly it sucked.

In three years, not only did we get handed a diabetes diagnosis, we found out we were expecting (at first we thought just one baby), then we moved, then found out surprise (it's two!). That first year of D is not something I'm proud of, but I tried my hardest and did what I was told to do, all the while suffering from morning sickness. Many times I gave injections, and tested blood sugar from the couch because well it just felt better there, instead of getting up and having the room spin around me.

Finally after questioning it over and over again, Clifford got to start "Carb Counting" in August of 2011. He was on that dreaded 'sliding scale' for a year and a half. I have to admit though as horrible as the sliding scale was we haven't had an a1c over 7.5%, except for Dx which was 10%) In fact in the last three years  ( 7.5%, 7.4%, 7.3%, 7.1%, 7%(twice), 6.9% , 6.8% (twice), 6.5%, 6.4% and 6.3%.  We moved forward into our carb counting journey with one goal in mind, pumping... I was told multiple times by those at Children's hospital that Clifford wouldn't get approved for a pump, his a1c was too 'good' and that injections were fine for him because he was doing 'good'. Well wouldn't it be better to move from doing 'good' to doing 'great'?? In fact that's exactly what happened after pumping, but we'll get there later. It took some time but I pushed for the pump, fought the insurance a bit, had an appeal, but low and behold in March of 2012 he started pumping (all paid for by the way and approved by the insurance) ;) . Within 3 months, just 3 months of pumping his a1c went from 7.0% down to 6.5%!! Then in September it was 6.3% and 6.4% in December. Before pumping the lowest we saw was 6.8% (which is rocking also btw, but as you can tell he went from 'good' to 'better').

It's been three years and he's gone from not knowing what to do, or how to care for himself to testing his own blood sugar 15 times a day (sometimes more, he's more obsessive about it than I am), to bolusing (giving insulin) for meals, counting carbs, correcting high numbers through the pump, and has even tried changing an infusion set.  Today's a day of celebration in that he's made it another year and lived it happy and healthy all while having Diabetes with him. As I said in 3 years a lot can happen!

Monday, February 25, 2013

KNOW the Signs

There is no reason that a child should die from un-diagnosed Type 1 diabetes. NO reason. But unfortunately, even with all the advancements in technology, and our better treatment options than that of what we had before, it's still happening, even today. Before Insulin what you see in the picture is what was happening. Children were dying from type 1 diabetes, because there simply was no treatment for it. They were put on starvation diets, to restrict from pretty much everything, and the outcome was a slow, painful death. Imagine the heart ache of their parents to witness them go through this.
Before and After Insulin (same child)

But NOW we have insulin, we have much better treatment methods, and we have more education then there was before. There should be no excuse for a child to die from a missed diagnosis. And with the increase of Type 1 diabetes cases being reported in children DAILY, it's important to recognize the signs and symptoms. I'm not going to lie, it was almost missed with Clifford, we almost lost him, because we didn't know the signs and symptoms, we simply thought he had the flu. I look back on it at times, now that I know the symptoms and wonder just how I could have missed it. But it happens. Let's take a look at the signs and symptoms (and I will tell you what they actually mean, having experienced them before) so that someday you can help save a young life.

Symptoms of Type 1 Diabetes

(These are the common symptoms you will see everywhere you look)
Frequent Urination
Unusual Thirst
Extreme Hunger
Unusual Weight Loss
Extreme Fatigue and Irritability
From our experience you can also have these symptoms
Blurry Vision
Extreme Weakness
Lack of appetite

Unusual Thirst
When it says unusual thirst, I'm talking every 5 minutes, always attached to a water bottle thirst. When your blood sugar is high, you become really thirsty. If you notice your little one, or perhaps hear of a friends child being thirsty all time time, it doesn't hurt to get them tested, or let the parent know it could be a sign. Diabetes takes hold, and doesn't let go. It acts quickly, and it's very serious. When Clifford was diagnosed he was unconscious for the first day because he was in DKA (Diabetic Ketoacidosis)

Diabetic Ketoacidosis is a serious condition that can lead to a diabetic coma or even death. Your cells are not receiving the glucose they need for energy, and will begin to burn fat for energy, which then will lead to ketones. Ketones are acids that build up in bloodstream, and appear in your urine when you are not getting enough insulin. They are a good warning sign that you have type 1 diabetes, your diabetes is out of control, or you are getting sick. High levels of ketones can end up poisoning the body, and when they get to high lead to the development of DKA.

As you can tell it's nothing to prolong, or perhaps I'll ask the doctor about it next time, well the honest hard truth is there may not be a next time to ask about it. Do it now if you suspect anything unusual.
Closest Picture to "Before Diabetes", this was in the hospital at Diagnosis, notice how 'tiny' he was.

As you can tell from the picture, Clifford looked really tiny (at least it's able to be seen by me now), he lost a good deal of weight before being diagnosed with diabetes.

After Diabetes, Healthy and on the life saving medicine known as Insulin.

We are almost 3 years (2/28/10) into our Diabetes journey and what I can tell you is the media is confused, Hollywood is confused, and many actors and actresses are confused. They mix up type 1 and type 2 diabetes all the time, and it's not acceptable. Because knowing the correct symptoms can literally save someones life!

Friday, February 15, 2013

A Full Time Pancreas

Sometimes after a long day or night of Diabetes I think... No wonder his pancreas decided to quit, this is a TOUGH job! No matter the amount of work we put into it, the consistency with meals, carbs, etc, nothing is ever going to be the same. I heard once that with Diabetes there are three things that are in your control (Counting carbs, amount of insulin you give, testing blood sugar), and there are 800 different things that you cannot control. I don't know about you but 3 to 800, I don't like those odds.

What does it mean to be a full time pancreas? I'm honestly not 100% sure. We are almost 3 years into playing Clifford's new pancreas and I haven't got it all figured out. I know that when I go upstairs at night to test him, my heart isn't sure how to feel, if it's a high # I'm up making sure he doesn't drop too fast, if it's a low # I'm up making sure he goes up quick enough. If it's a normal number, I go back to sleep for a few hours with the uncertainty of what's going to happen in those few hours.

I know what it feels like to put your child to bed at night with no worries, and that their body is going to work properly and do what it needs to do to keep them alive. We have kids that don't have Diabetes, and let me tell you that feeling is refreshing and wonderful. So if your reading this and your kids don't have diabetes, no matter what is going on in your life at this very moment that you think is horrible, just soak in that feeling, as there is none like it.

It takes some time swallowing the feeling of putting them to bed at night, saying I love you's and "I'll see you in the morning" when you really don't know if that second part is true. All you can do is do the best that you were trained to do and hope that you see their smiling faces in the morning.... That's what being a full time pancreas is.