Our Hero...Billy M. (long story and pic heavy)...

[Father_0f_7]

As you may or may not know from my new signature, November 14 is World Diabetes Day (so if AT ALL possible, and if I'm not asking too much, could you please wear blue that day to raise awareness/show support for Juvenile Diabetes).

Also, November is National Diabetes Awareness Month. Every World Diabetes Day is meant to raise awareness and think about people with the disease. This WDD will be the same as others, yet very different.

I have been a member of this forum for quite some time now, but I am also a member of other forums (all Type 1 Diabetes related) the DOC (Diabetic Online Community) is very small...they become your family.
"Alec, Jesse, Trent, Chantal, Madeline, Breanne, and Mary Kathryn are names I type with a heavy heart. They are a small collection of names that belong to a larger list of children who have lost their lives to Type 1 Diabetes. On October 20, it was with great sadness that I add the name of another beautiful child...Eilish.

I cannot begin to fathom the emptiness that must exist. The heartache. The grief. The news that day knocked the wind out of me...and reminded me, once again, of how quickly everything can change. My immediate thoughts turn to Eilish's parents...parents who were vigilant and educated, parents who embraced the challenge of Type 1 Diabetes and were sacrificially willing to do whatever necessary to ensure their daughter's well being. Parents who, on October 19, feared this potential complication int eh back of their mind - and woke up on Oct. 20 to realize it firsthand. This family will FOREVER be in my thoughts."

OH, and just because it's SAE Day (Support - Advocate - Educate) I give you one of many blog posts...

So I am dedicating this post to people who don't understand Type 1 Diabetes. Especially for those who figuratively roll their eyes at Type 1 and for those who have uttered, "How is it that big of a deal?" or have lectured, "At least it's not cancer!"

Well, for you my dear friends, I am putting you in charge of bolusing my son for lunch today. (Bolusing means giving Billy insulin. There is a whole new language that comes with this disease.) Come on...it's ONE time. Fix Billy up for lunch. It's no big deal, right? Give it a whirl!

Here is your scenario: (and I promise this is a VERY typical one. And don't worry, this is a boy with the easiest ratios). Billy calls you at 12:15pm. He has just eaten his lunch and wants to know how much insulin to give himself. Some information you need to know:
-His blood sugar number was 130 before he ate lunch at 11:50am
-He ate 1/2 an apple, most of his pretzels, his yogurt and his entire sandwich. He also ate an Oreo that his friend gave him.
-He gets 1 unit of insulin for ever 20 grams of carbs he eats.
-One unit of insulin brings his blood sugar, (or BG) down 100 points. His blood sugar goal for this time of day is 110.

Ready to calculate?
-Correction = 0.2 units. To bring his sugar down the twenty points needed.
-Carb bolus = 10g for the 1/2 apple, 10g for the mostly eaten 15 carbs of pretzels, 40g for the sandwich, 15g for the yogurt and 5g for the cookie. This is 80g of carbs. 80g Carbs is 4 units of insulin.

So what would you give him? 4.2 units of insulin? You would be totally wrong. You don't have all the information! Yes, his pre lunch BG was 130. But he had a snack 1 hour and 40 minutes before that. He had a banana (30g). So at 10:15 he got 1.5 units of insulin. Insulin stays in your ssytem for 2 hours. My boy had approximately 0.7 units that is still in his system from the 4.2 units you were planning on giving him. That means you are now going to give him 3.5 units...STOP! DON'T DO IT! More information needed!

He has PE after lunch today. They are doing relay races. Exercise DROPS his blood sugar like a rock. Better take away a unit of insulin for good measure! (How do I know 1 unit? You learn. Instincts are a big part of taking care of a child with diabetes.)

So now, how much insulin are you going to inject into my little boy? 2.5 units. Better...but um...sorry. There is yet another small bit of information you need to take into account. We have been adjusting Billy's basal rates (Basal: The underlying insulin that his pump delivers to him in small puffs ever few minutes throughout the day.) Billy has just ended a growth spurt and has been suddenly, for the last two days, dropping like crazy between 1 o'clock and 3 o'clock. Since we wait 5 dyas to establish a pattern, we need to leave his basal's as is..and at this moment, we need to adjust for these potentially scary lows. Better take off another 1/2 unit to keep him safe. (Yeah, because I said so!)
Final answer: 2 units of insulin needs to be delivered. And you were going to give him how much? 4.2?!?!
That is 2.2 units of insulin too much. That amount of insulin would have brought his blood sugar down 220 points. Which, with all that running around he was doing, would have put his blood sugar number at a negative number. Yeah, you can't be alive with a negative number.

But don't worry! We get to do this again for his afternoon snack! And again at dinner! And again before bed! And again at 11pm! And again at 1am, and again at breakfast tomorrow! LOTS AND LOTS OF PRACTICE!! YAY!

And the variables are never ending. A meal eaten with high fat changes everything. A meal eaten a couple hours earlier with high fat changes everything. A big test at school changes things. A substitute teacher changest things. A small cold changes everything! A growth spurt, field trip, or night of unexplainable highs changes everything. The weather sometimes changes everything. EVERYTHING CHANGES EVERYTHING!

I couldn't even write it down if I tried. And hey, I just tried. Worst part is...I don't know everythign there is to know about this disease. Because, I'm not a pancreas. I am a human being. Unfortunately.

So when you think you are ready to judge even one second of my split second decision about my little boy's health...think again. Because this disease is impossibly complicated. Billy will spend the rest of his life trying to hit a moving target.

And that is all I have to SAE!

Thank you for listening (reading)...


And now PICTURES!!

 

[Father_0f_7]

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His Pod

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5 different numbers...which one is it?

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Backup pod...just in case

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A rare moment of night time perfection

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Before going to the air show

 

[Father_0f_7]

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The boy loves him some music!

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He looks really young in this picture

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This is why we cary a backup

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The twins...She got him!

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Can you spot the pod?

 

[Father_0f_7]

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Well that's not good

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Yep, he's singing for Nick Jonas

 

[bssage]

Wow. I had no idea.

Its incredible the things we are capable of when we have to. Almost as incredible as understanding how happy we are to do it for someone we love so much.

Thanks for the education.

 

[Father_0f_7]

Thank you for listening.

I don't mind at all when people ask us questions about diabetes. It's when they think they know it all and tell us what he can and can't do. AHH

 

[singledad]

Thank you for educating me, and thus enabling me to be more understanding in future. I had no idea it was that complex.

That's one brave little boy you've got there...

 

[ElliottCarasDad]

That does sound complicated. Thankfully there is technology out there to help him and he is doing well. I cant image how this was treated years ago.

 

[mom2many]

I have to say first...WHAT A CUTIE!!!!!!! I love how his smile touches his eyes!

My stepdad died after entering a diabetic coma, I know just how real it is. I also had a friend with diabetes and there were many times we would stop what we were doing just so she could test herself.....however your post put a bigger spin on it. While I understand the mechanics and the basics, I never knew how intense/complicated it can be.

Now one more time...he is super cute!

 

[Father_0f_7]

I cant image how this was treated years ago.

I know, we often think of what diabetes was 10 or 20 years ago...I don't even want to think about how hard it must have been.

I have to say first...WHAT A CUTIE!!!!!!! I love how his smile touches his eyes!

lol thank you. We like him haha

 

[NancyM]

Omy gosh, thats all I have to say. I never realized how much went into it either.

I only know one child who has Diabetes, I never cared much for his mother, always flighty, and quite careless IMO, but now I see how careful she must have to be to take good care to her son as she has.

It shows you just never know.

 

[Xero]

Wow, I had no idea there was so much involved!! Its just not fair that any child should have to go through something that makes life so complicated. I wish he could just be all better! I can't imagine how hard it must be.

I will try to remember to wear blue that day. And yes, holy crap, he is completely adorable!!!!

 

[Father_0f_7]

One day I will have to post the story of how we noticed something was wrong...we were so overwhelmed. We thought it was just like "this is your blood sugar, this is what it needs to be...fix it" kind of thing. Then we had to stay at the hospital for 3 days and we were just like .

So much to do so little time lol.

And yes, he is a cutie...I don't think he gets that from me.

 

[Father_0f_7]

<r><COLOR color="dimgray"><s></s>I said I should post Billy’s diagnosis story one day, so I guess today is as good a day as any other.<e></e></COLOR><br/>
<COLOR color="dimgray"><s></s>In 2009, I turned 9, traveled to Ohio, Georgia, Washington DC, and Italy. I started 3rd grade and my second year of AGP (advanced math/science). I went to the state fair for the first time and rode the BIG rides. I was Mario for Halloween, a reporter for the 3rd grade play and I danced like a crazy person at a Pirate Dance. I received an award for being a Terrific Kid and my recycling project went on to the county level competition. And in that same year, my life was changed forever. This is my story. <e></e></COLOR><br/>
<COLOR color="dimgray"><s></s>- First paragraph of Billy’s 3rd grade English Essay<e></e></COLOR><br/>
<br/>
<COLOR color="dimgray"><s></s>Billy has always been a skinny little guy. Not boney skinny but the kind of skinny some dream of, six pack and all. For him, looking “thin” was nothing unusual. A good growth spurt had him tugging at his shorts every minute to keep them up. Then he would put on a few pounds and everything was good. It had been that way all his life, so looking back, I can’t remember noticing the weight he lost. But if Amber and I look at photos from that summer…it’s there, and it breaks our hearts.<e></e></COLOR><br/>
<br/>
<COLOR color="dimgray"><s></s>Fast-forward to starting 3rd grade. A few things had happened. The teacher they paired Billy with was not a good match AT ALL. We knew that pretty quickly. Then, his AGP teacher (that he LOVED and had been wonderful with him in the prior year) was moved to another school a couple weeks after school started, leaving their class with subs until they could find a permanent replacement. Billy was devastated…really devastated…cried about it. Suddenly, he was getting in trouble EVERYDAY. He started wetting the bed; even though he had been done with that for a LONG time. We were going crazy trying to understand why he was SO out of control.<e></e></COLOR><br/>
<br/>
<COLOR color="dimgray"><s></s>Skip ahead to September. We started getting reports from other places. “Can you please send a water bottle to AGP; he is having a meltdown because we don’t have a water fountain”. At some point I remember being asked if “everything was okay at home.”<e></e></COLOR><br/>
<br/>
<COLOR color="dimgray"><s></s>His home room teacher (still not a good match) tells us “he isn’t allowed to have a water bottle because he is messing with it too much during instructional time.” She was not easy to work with. We told her why we were sending it. She didn’t see a water issue in her class and it was distracting him.<e></e></COLOR><br/>
<br/>
<COLOR color="dimgray"><s></s>At home, he started to become a bit unbearable. He was irritable and sometimes just plain nasty. This was not my loving child.<e></e></COLOR><br/>
<br/>
<COLOR color="dimgray"><s></s>Then, the week before, as I was picking him up from daycare the teacher stopped me, “Can you please send him with a water bottle?” WEIRD, I thought as I told her this wasn’t the first request, but that it wasn’t happening everywhere. Honestly, I chalked it off to more acting out. Billy got in trouble for his actions that night. We feel guilty about that now. We feel guilty about many things.<e></e></COLOR><br/>
<br/>
<COLOR color="dimgray"><s></s>September 19, 2009. I can remember every detail about that day. Something happened in school again and we were fed up. We made an appointment with the pediatrician for that afternoon. We were in search of a referral to see a Psychologist because we had enough. We were tired of this teacher’s attitude, tired of Billy acting out, wetting the bed, and getting in trouble EVERY SINGLE DAY. We just couldn’t take it anymore.<e></e></COLOR><br/>
<br/>
<COLOR color="dimgray"><s></s>Amber and I explained to the pediatrician what had been happening. We asked for a referral. Dr. D agreed to give us one, but she wanted to test his urine first just to rule everything out. She pretended like it was probably nothing…but she knew. We sat there – still convinced that we knew what the problem was. Had we known what was coming…we may have run.<e></e></COLOR><br/>
<br/>
<COLOR color="dimgray"><s></s>In comes Dr. D with Dr. A. I think my stomach sank a bit when they both walked in. It was then that I realized this was not going to be good. Then the words left her mouth…at that point there was no turning back, no chance to run. We were in complete shock!! It was like I was in the room, but I wasn’t there and I wasn’t hearing this; yet the words were ripping through me like broken glass. I remember staring straight at her, my eyes did not want to move. I knew if I looked at him, it would be the end for me. Amber didn’t dare to blink because then the tears welling up in her eyes would fall. I’m not even sure if we continued to breathe. We were so numb.<e></e></COLOR><br/>
<br/>
<COLOR color="dimgray"><s></s>Dr. D had a nurse take Billy out of the room because she knew we were trying so hard not to lose it with him there. She gave us as much info and support as we could possibly handle at that point. She spent more than our share of time with us that afternoon, and I greatly appreciated that. A while later she looked at us and said “You need to take him to the hospital right now”.<e></e></COLOR><br/>
<br/>
<COLOR color="dimgray"><s></s>We arrived at the hospital to begin a three day cram session with the CDE (Certified Diabetes Educator) on how to keep our 8 year old from dying. THREE DAYS! That’s all we were given to learn how to mix insulin, count carbs, what a serving size looks like, how to give our son injections, signs of hypo’s, signs of hyper’s, Glucagon…oh dear lord, the Glucagon. We learned how to test blood sugars, what a ketone was and how to test for them. What to do for ketones, high glucose and low glucose and even what to do if our 8 year old suddenly has a seizure or becomes unconscious.<e></e></COLOR><br/>
<br/>
<COLOR color="dimgray"><s></s>That is more information than most people can handle in three days. To make matters worse, right in the middle of it all, I had to inject my crying, begging, pleading, EIGHT year old son with insulin for the first time. I was still in shock, my head was spinning, my heart breaking, just wishing I could trade places with him. I was beside myself and none of this made sense. It didn’t matter if we didn’t know what we were going to do; after those three days…<e></e></COLOR><br/>
<br/>
<COLOR color="dimgray"><s></s>WE WERE ON OUR OWN<e></e></COLOR><br/>
<br/>
<COLOR color="dimgray"><s></s>We left the hospital knowing we needed to feel Billy. He wanted to go to Red Lobster. At that point he had his insulin about an hour earlier and Red Lobster was about 45 minutes away. We didn’t know any better…we headed wherever he wanted to go. We had no food with us, nothing to treat a low…we didn’t know any better. We did make it there, but as we were walking, Billy started complaining about being dizzy. I told him to hold on just a minute…I didn’t know any better. When we sat down Amber asked the server for some crackers while I tested Billy. He was super low. I don’t remember the exact number but I know it was in the 30s, and it scared me. I remember hanging my head down. All I could do was cry.<e></e></COLOR></r>

 

[Xero]

Ugh, I am so tearful right now!!! I wish I could just take it all away from him! You guys be strong. He's lucky to have such amazing parents to take such amazing care of him.

 

[NancyM]

I too am in tears. It's all too much. I know your family will make it, and Billy will grow up to be a normal man who may make his mark on this earth by educating others about childhood diabetes.

Unfortunately I don't hear much talk about it, but because of you enlightening me about childhood diabetes, I will pay better attention when I do.

Thank you for Billy's story.

 

[Father_0f_7]

He's lucky to have such amazing parents to take such amazing care of him.

Thank you for the praise lol, it helps a lot. Sometimes we do get discouraged and need some encouragement.

Unfortunately I don't hear much talk about it, but because of you enlightening me about childhood diabetes, I will pay better attention when I do.

We didn't hear anything about it either until his diagnosis. We knew what diabetes was, but all we ever heard about was Type 2 (older people usually get it, it is because you're overweight, all those types of things).

It's kind of unfortunate that there is all of this publicity for breast cancer and nearly nothing about type 1 Diabetes. Don't get me wrong, Breast Cancer needs all the awareness it can get, and I'm glad that it gets as much as it does, but I just wish Type 1 got just a piece of that.

 

[mom2many]

A lady I once worked with could have wrote your post word for word. I remember having talk with her and her complaining about how her DD had seemed to change over night and that she could not figure out what had suddenly triggered it.

Fast forward a few months and her DD was really sick, but didn't seem to have any real cold symptoms, 3 days later and her dd was still sick, sicker even but it being a weekend she debated what to do. Finally she desided to go ahead and take her to the ER, the doc's told her had she waited another hour she would have lost her dd. Her DD had type 1 diabetes. She felt so guilty for so long, like she should have known, she should have seen the signs. But like you said, most do not know what signs to look for, and a lot of the signs can be attributed to an unruly child. It wasn't until after everything seteled down that she realized her Dd had been drinking a lot more then normal, and that was unruly was really highs and lows.

Your right, there needs to be more awareness of the disease so that more parents aren't looking back going "If only I had known".

 

[16th ave.]

had been wondering 'bout everyone here, so its good to see ya there fo6, kudos to you all, ya seem to be handling things pretty well every time ya post about the t2d,
typically wear green for work but if i aint that day i'll be sure to atleast have a pair of blue jeans on..