World Diabetes Day 2010

In what has become a tradition on the blog, I'm letting Joseph's voice speak for the both of us today:





(Blows my mind to look at this video, and the one from last year... and the year before... I am so dang proud of him.)


Once again, the blog is blue until the end of the month in honor of Diabetes Awareness Month.

D-Blog Day 2010

Today is the sixth annual D-Blog Day (thank you, Gina Capone!) -- and though I’ve spent little time on the blog over the past year, there’s no way I could let the day go by without posting.

In keeping with this year’s theme, here are six things I want everyone to know about diabetes (along with a boatload of links to illustrate them):

1. Diabetes is a thief.

It steals time.

The time it takes to count carbs, prick fingers, test blood sugars -- and to THINK about what all those bloody numbers mean; the time needed to treat the inevitable high and low blood sugars.

It also steals experiences -- because it cannot be ignored.

And even with the best of care, it steals lives.

2. Managing diabetes forces children to grow up too fast; the risk of complications forces children to grow up too fast.

3. An insulin pump and infusion set does not equal a working pancreas.

Pumps malfunction; cannulas bend -- sometimes with frightening consequences.

And even when fully operational, these tools are only as good as the humans operating them (see #5).

4. Parenting a child is hard; parenting a child with type 1 diabetes is heartbreaking.

5. Just because we’re not perfect, doesn’t mean we’re not trying.

So much about managing diabetes truly is a shot in the dark. You can test and log your blood sugars, watch what you eat, exercise, treat highs and lows as they happen -- use the best technology available to you...

But still.

You will never have perfect (or even near perfect) control all of the time.

Because as much as any of us try to “think like a pancreas,” we will never be a pancreas.

6. Community makes a difference.

The Diabetes Online Community saved me that first year after Joseph's diagnosis. Just knowing we were not alone gave (and continues to give) all of us strength.

(Thank you, DOC!)

And here is my bonus 7th thing...

7. You can help someone who needs insulin, but can't afford it just by watching a video. Really.

For every view of the video below, a donation will be made by Roche Diabetes Care -- up to $75,000 -- to the Diabetes Hands Foundation. This money will be used to help provide insulin to children in the world’s poorest countries.

Again, all you have to do is watch.



We have to get to 100,000 views by Sunday to get the maximum donation, so again -- please watch!

Seriously, it's been mostly good

After writing my last post, I felt a whole heck of lot better. I needed to talk about what happened that day-- and wanted anyone reading to be aware of how quickly ketones can get out of control.

And to be prepared if they do.

Well, this post illustrates the flip side-- our norm this summer (vs the craziness of last Tuesday).

A summer filled with drama (the stage variety, that is), swimming, and baseball.

Oh so very much baseball.

While Evan was busy discovering her inner Sarah Bernhardt, Joseph came into his own at the plate, batting over 300 in the regular season and making the All Star team yet again.


He's come a long way... remember this little guy.

This season Joseph continued to thrive on the mound, pitching in both regular season and All Star tournments, but also playing other positions-- including catcher (despite being a lefty!).

And diabetes?

Well, it dished out plenty of highs and lows-- but mostly, it stayed out of Joseph's way.

Soooo, here now is a 3 minute taste of it all...

Enjoy!

When you think it can't happen to him

I need to remember to put the phone by Joseph so I can wake him up to do a check after I'm gone.

(That's my first thought on waking at 6:15 am last Tuesday morning.)

This will be Day Two of a conference I'm attending for my job. The event pulls together folks from citizen advocacy groups across the Midwest. And since most of the work I've done this summer has been from home, this opportunity to learn, share ideas and meet other advocates is welcome indeed. In fact, I rearranged our summer vacation plans so that I could be in town for this thing -- and I'm really glad I did.

I have to be downtown at 8am, the same time Ryan has to be at work -- and Joseph is going to watch Evan for us.

Before heading downstairs to shower, I snatch Joseph's meter and logbook up off my dresser, and step quietly into his room. My boy is stretched out on his futon, face buried in his pillow, when I take hold of his right hand and prick a finger.

368

Wait-- that can't be right.

Whipping open his logbook, I see that he was high all night -- and that he and Ryan did a set change at 2am when he was 398.

Ryan noted that he'd had a bent cannula.

Despite the fact that Joseph has been in the 300s before -- that there have been times when he's experienced a night of high blood sugars, and he's been okay -- I get a sick feeling.

Deep down in the pit of my stomach.

It takes all of 10 seconds for me to run downstairs, grab the blood ketone meter from the black bag, tear open and load a strip, and prick yet another of Joseph's calloused finger tips.

2.1

Oh no.

In almost six years with diabetes, Joseph has never had a blood ketone reading higher than .5 -- a urine ketone strip darker than pink.

Not even at diagnosis.

"Joseph... Joseph... Bud, you need to get up," I say, shaking him gently while trying to stay calm. "You're really high and you've got ketones. A lot of ketones."

Joseph is suddenly bolt upright and heading into the bathroom. Seconds later, he walks back into his room, wide eyed -- holding out a urine ketostick with a dark maroon tip.

"Okay, Bud-- let's get you some water. We need to flush out those ketones."

"What's going on?" Ryan asks, joining us in the hallway.

I fill him in as the three of us move quickly downstairs. Even though Joseph has a new 4-hour old set, and a correction on board, I draw up a shot, inject, then have him sit on the couch and drink a glass of water.

"This is really bad," I tell Ryan quietly in the kitchen-- and as if to illustrate this point, Joseph calls out from the couch:

"Mom, my stomach doesn't feel good- "

He hardly gets the words out of his mouth before he's back up and running to the bathroom. I'm right behind him. He barely makes it to the toilet before he's retching violently. I crouch down by his side and rub his back. When he's done, Joseph sits back, leaning against the tub.

"I feel a lot better, Mom," he tells me in a shaky voice, "I think I just needed to throw up."

And for half an hour, he really does seem better.

But then when I check him again at 7am, his blood sugar is 323; ketones are now 2.4.

Worse -- after more water, he's vomiting again.

We can't do this ourselves.

I grab the phone and punch in the number of the diabetes physician on call at our clinic -- then pace all over the house until finally, 15 minutes later, he calls back.

I give the doc everything -- Joseph's numbers from the previous night (he was 120 before dinner, before climbing into the 300s overnight), ketone levels, the vomiting...

"All right," he says, "it sounds like you're doing all the right things. You need to give him insulin by syringe every two hours, using a sliding scale -- let's not rely on the pump. Also, you need to give him calorie-containing fluids -- watered down orange juice, flat soda... -- and then insulin for them. Remember, the idea is to bring down the ketone levels, not necessarily the blood sugar.... "

"Should we just bring him in?" I ask, trying to keep the panic out of my voice.

"No, I think you may be able to turn this around at home -- but if you don't see improvement in the next 4 hours, then you'll have to bring him to the emergency room."

"Okay," is all I can say. Anything else is caught in my throat. Through tears, I write down the sliding scale for Joseph's injections.

Then I take a deep breath and return to the kitchen.

"Ryan, we need calorie-containing fluids -- the doc suggested watered-down orange juice, but I think the acid is going to be too hard on his stomach. Ginger ale and Gatorade or G2 might be better."

So Ryan heads out to a store five minutes from our house.

And I'm pacing again.

It ends up taking him nearly 20 minutes.

At 7:50am we do another check-- Joseph's blood sugar has dropped to 268, ketones to 1.9.

Thank. God.

I have him drink a small glass of G2, and within minutes he's vomiting again. Bending over him, I press gently on the back of his his neck with a cool, moist cloth. "You're gonna be all right," I say to him, over and over.

A little over an hour later -- at 9am -- his blood sugar is 245 and ketones have dropped to 1.5.

"I think he's turned a corner," I tell Ryan.

"Maybe you can go to your conference," Ryan says, "I can stay home the rest of the day... "

"Maybe... but not until I know he's really okay and- "

"I'm hungry," interrupts a small voice coming from the stairs. Evan is awake and ready for breakfast. Ryan gets her a bowl of cereal. After eating she joins her brother in the living room, settling in on a chair next to the couch.

At 9:45, I leave a message for my boss bringing him up to date on what's happening, telling him that Joseph is feeling better and that I might be able to make it to the 11:15 session -- unless something changes between now and then.

And it does.

15 minutes later, when I check Joseph again, his blood sugar is 287 -- ketones are back up to 2.2.

The whole time, even though we've been injecting him, Joseph has been connected to his insulin pump. I'd hoped the basal insulin he was getting from it might help...

"Bud, can you pull out your set?"

He reaches down to his left hip, takes hold of the set and pulls.

Then we both just stare at the cannula: a tiny teflon tube, bent so flat it's flush with the surrounding adhesive tape.

Two. Two bent cannulas.

"I should have had you do that earlier. I just assumed... a new set... "

When I leave the room to get a new infusion set, I stand alone in the kitchen. Frozen. Thinking about this stupid mistake and what might happen because of it.

Then I grab a set.

After insertion, I give him yet another injection.

An hour later, at 11am, Joseph's blood sugar is down to 264.

But ketones are 2.5 and he's throwing up again.

"Bud, how do you feel?" I ask him, when he resettles on the couch.

"Better," he says, "actually... I feel hungry."

We both laugh. But still, I'm frightened-- and feeling more helpless than I have in a very long time.

Noon is the cut off, I tell myself.

Regardless of blood sugar, if ketones aren't improving or he throws up again, we're going to the ER.

At 11:55, I take hold of his hand.

"I'm sorry I have to keep doing this, Bud."

"It's okay, Mom." Then he gives me a long look. "Thanks for staying with me."

I look down at his hand in mine, unable to say anything. Then, praying silently, I prick the tip of his finger, touch it to the loaded strip and stare at the meter's display.

.9

And it's like a mass has suddenly been lifted from my chest.

"Yesss!" we both say, high fiving and fist bumping.

Blood sugar is still high at 244, but thankfully, it too is coming down.

"Mom, if my ketones keep going down, can we get Subway for lunch?"

"Whatever you want, Bud... whatever the heck you want."

Then I sit with him on the couch, his head in my lap, and watch reruns of the Cosby show, during which his ketone levels fall from .9 to .7 to .4 -- and finally, to zero.

(Though it takes until eight o'clock that night to bring his blood sugar down to 115 -- and far longer for me to feel in any way relaxed.)

Oh, and yes-- we did indeed get Subway for lunch.

Some of what you've missed

The kids are on spring break this week.

And sadly, all of Joseph's friends are out of town, making for a somewhat quiet few days.

To remedy this situation, we're heading out tomorrow for an impromptu visit to Chicago. Three days of traipsing around our old neighborhood, of taking in some sights... Millennium Park, the Art Institute, the Lincoln Park Zoo. Oh yes, and eating awesome Thai food, maybe some sushi.

It's gonna be great.

Now, while I'm here... I realize my posting has fallen way the heck off. And I'm sorry.

Really.

I can't make any promises, but if you're still out there reading, I will try to post more often.

In the meantime, a few short updates:

The shoulder is better -- much better. Not a hundred percent, but I made about 20 "backboard shots" playing one-on-one with Joseph on our driveway yesterday.

So, yeah.

The job has been crazy, but still pretty great.

Parenting a teenager has been a learning experience for us all. Sometimes it feels like I'm parenting two teenagers, Evan is just that savvy.

And then there's the diabetes.

Still there, still throwing us curves every once in a while. But (thankfully) nothing like it did this past fall.

Joseph continues to take ownership of more and more of his diabetes management. Last night, for example, when he finished eating a big plate of pesto pasta, he got up and cleared his plate while Ryan, Evan and I were all still eating. I turned to remind him to bolus, but before the words got out of my mouth, I saw him leaning over the kitchen counter, diabetes supplies laid out in front of him.

"What are you doing, Bud?"

"Oh, it's a set change day... I'm just gonna put in a new set before I bolus."

"Good thinking, Bud-- nice job."

"Mom, I'm getting pretty good at this stuff, you know."

"Yes, you are," I said. "And I'm getting pretty good at sitting on my hands."

At that, his head came right up-- and then, flashing me that wonderful grin of his:

"Yes-- yes, you are."

To fill in still more gaps, I thought I'd share some images/a bit of video footage from this fall and winter -- for example, giving you all a glimpse of what the kids wore on Halloween, a peek at some night sledding on this year's backyard hill, my fabulous makeover... and really, just how much the kids have grown over the last six months.

Enjoy!

In which we frighten one of Joseph's friends

"Mom, Liam doesn't think you like him."

"Bud, why would he think that? I don't even know him."

"Remember when you met him at the high school orientation night, when I was kidding with him and said, 'Dude, my mom doesn't like you'... well I think that's why."

Then Joseph's eyes take on a slightly evil glint. "Hey, I have an idea... since Liam's coming over after school tomorrow, why don't you act like you really don't like him? It'll be funny."

"I don't know, Bud... "

"C'mon, Mom-- it'll be funny."

So the next day, I'm heading up our block on the way to get Evan after school when I spot Joseph and Liam walking toward me.

"Hey Bud," I say, then turning to his friend, "Hello-- Liam," I spit out, before turning my head quickly away -- like I just smelled something really bad.

When I turn back toward the boys, Liam's blue eyes are huge; his face, drawn up in fear.

"Liam, hey.... I was just kidding."

Even though his expression melts into one full of relief, I immediately regret our little prank.

"Mom, don't worry," Joseph says, noting my concern, "I told him you were gonna do that when we saw you coming-- but you were really convincing. That was great!"

So we all have a good laugh before going our separate ways.

Fast forward to one week later -- the morning after Liam has his first sleepover at our house.

I come downstairs to the smell of fresh coffee, orange pancakes and bacon. Ryan is standing in the middle of the kitchen, spatula in hand, yuckin' it up with Joseph and Liam as both boys sit at the counter, ready for another round of pancakes.

"So Liam, how did you sleep?"

He looks up at me as if at a loss for words.

Then they all start laughing.

"What? What?"

"Okay, so I go in to check the boy last night," Ryan begins, "and remember how he sat up a few nights ago when I was checking him-- he wasn't awake, but he kept pulling away like he didn't know what I was doing?"

"Oh no," I say.

He smiles and continues.

"Well, last night I reach up to the top bunk, take Joseph's hand-- and he pulls it away. I try again, and he says, 'please... please... stop!' I finally grab hold of it a third time and tell him, 'Mister, I have to check you.' That's when he sits up and I see his face."

"It was Liam," I say.

Absolutely horrified.

Quickly I look down at the boys and (thank god) they're both laughing.

"Oh, Ryan-- how could you make that mistake?"

"I know," he says, shaking his head, "I just forgot the boy was in the bottom bunk."

Later, I ask Joseph if his friend was really okay.

"Mom, he's fine."

"And how do you feel? I mean, do you feel bad or embarrassed about what happened?"

"No, Mom. Not at all. Actually it gave us a funny story to tell... believe me, it's all good."

I'm glad they found it funny. But still, what Liam must have thought when Ryan came at him with that lancet...

Spring Thaw

Wow... three months. I can't believe it's been that long.

Well, we're still here -- and it looks like we've made it through yet another Wisconsin winter. The sun is shining, it's 60 degrees, and (Hallelujah!) I can move my arm again -- still limited, but way, way better than when I last posted to the blog.

Look how high I can reach with that arm... Hurray!

This, despite one major setback in early January.

When my insurance company decided that because I wasn't making "significant progress" with each and every visit to physical therapy, these visits now fell under the category of "maintenance" -- and as such, would no longer be covered by our plan.

No. Way.

So this is what went down: I called my case manager, and within two minutes discovered she was clueless about adhesive capsulitis (aka "frozen shoulder"). I'd barely hung up the phone when I was back on with my orthopedic specialist and PT.

Both wrote letters educating her about the condition; explaining that progress is slow and physical therapy, crucial.

And then I waited.

Four weeks.

During which time I experienced much regression (i.e., more pain, less motion).

Until finally, I called my case manager yet again:

"Have you received the letters from my doctor and physical therapist?" I ask her.

"No, I don't believe we've received any letters... but let me take a look."

"Wait a minute-- these were sent over three weeks ago."

The sound of paper shuffling on the other end.

"Oh yes, here they are.... hmmm... we'll have to review these and get back to you."

"Get back to me!? It's been FOUR WEEKS! And this thing is getting worse-- again! I'm back to waking up every night in pain... "

And then I just lose it.

"... I can't reach my back pocket! I can barely dress myself... this is INSANE! I've had this thing since early fall, finally get the right diagnosis, finally start making progress... and now because of some arbitrary decision -- a decision my DOCTOR does NOT agree with -- I'm back to where I was in November." I pause, tears now streaming into the receiver.

Silence. No response.

So I continue.

"What is your FULL name? I want to know exactly who is responsible for this decision."

"I-I... well... um... I will walk your file down for review right now," the case manager says. "I'll write 'priority' on it."

And then she pauses for maybe a second before saying, "I'm so sorry."

The next morning I get a call from my PT.

"Sandra, your insurance company just faxed approval for another 12 visits. We're back in business!"

So there you have it.

Six weeks later, I'm still doing my exercises, still going to PT-- which continues to be ridiculously painful (but I get back a little range of motion with each visit, so it's unbelievably worth it), and according to my doc, I am now in the third and final stage of this thing-- the thawing phase.

Hurray, indeed.