Monday, July 26, 2010

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.


39 comments:

Rachel said...

Ketones aren't something G thinks about much with 300's. This post leads me to believe we should have a ketone testing kit.

Thank you for sharing this scary learning experience.

Scott K. Johnson said...

Man, what a scary mess. I can't believe the luck of TWO bent infusion sets. Ug.

I'm so glad that you were able to get everything turned around at home, and that he's feeling better.

Cara said...

:( Ug. Sounds like a really stressful time for all of you. I'm glad he got though it and that you did too!

Sandra Miller said...

Rachel -

Yes, G should have one. I got a blood ketone kit because the urine sticks give you hours-old information. Though, as I said in this post, until last week, we'd never had a scary result with it.

I guess it's like having insurance, you might never really need it -- but when you do, it can be a life saver.

Scott -

I couldn't believe it either. But Joseph is putting on more lean muscle, which in turn is shrinking those areas we use for his infusion sites. I think he must have hit muscle (twice!). Crazy...

Cara -

Thanks, and yes it was stressful.

Joseph played in an All-Star baseball tournament over the weekend. Cannot tell you how many times I reminded him to drink water/G2...

George said...

That is so scary. I rarely check for ketones unless I am feeling sick to my stomach.

I am glad all worked out but UGH to those infusion sets. So annoying.

Take care.

Sandra Miller said...

Thanks, George.

It's weird, because we too don't check for ketones all that often, but this time I just had a feeling.

Now I'm really spooked... if Joseph's in the 300s and there's a chance he could be dehydrated (which I'm pretty sure is the culprit, since it was hot and he'd been active the day before), we're checking for ketones.

Carol said...

What a scare, Sandra! I'm so glad you were able to turn it around. This reminds us all how diabetes can get ugly very fast.

I'm also glad to see a post from you. How is your shoulder?

Molly said...

Yuck! It's times like that when I realize that a kinked cannula is going to cause a day of headaches. (and stomach aches!) When relying on only fast acting insulin, it's amazing how quickly ketones appear.
Sorry that Joseph (and YOU!) had a day like that.

Caro said...

So sorry that you guys had to go through this experience, ad so glad you got it all under control.

I had a bent-completely-flat-not-even-in-skin infusion set disaster on Friday night. It sure reminded me how quick blood sugars shoot up when you're not getting insulin. I was lazy, and corrected twice via the pump in the middle of the night - no syringes, no set change. So you guys did way better than me on the management front. I was just lucky to avoid major ketones!

meanderings said...

I'm exhausted just reading about it! Can't imagine how pooped you all were.
Glad all is well now.

phonelady said...

Of course this must have been the day for it cause I have sick too throwing up too and sick to my stomach for most of the day .

Sandra Miller said...

Carol -

Indeed. One heck of a reminder for us, that's for sure.

The shoulder is much better - thanks for asking. Still doing PT, but not as frequently. (Sadly, now my knee is giving me trouble. Dang!)

Molly -

Yes, it is amazing how quickly they appear.

Thankfully, yesterday (when I took the kids swimming) was a whole lot better:

Joseph's bg was in the high 200s (2 1/2 hr post-cereal spike). He disconnected from his pump, swam for 20 minutes, and was 140.

Then he ate lunch, bolused for less than half of the carbs he ate, and, remained disconnected for another 3 hours-- ending the afternoon at 107. Very nice.

Caro -

So glad it didn't take a bad turn for you, too.

I'm telling you, after Joseph and I saw that second bent cannula, we were starting think we'd gotten a bad box of sets...

Meanderings -

Yes, for the moment all is indeed well. :-)

phonelady -

Yikers! I hope you're feeling better soon.

thisiscaleb said...

Wow.

I'm sitting right next to you as you describe every step, feeling every single stomach-dropping, heart-in-your-throat moment. And even high-fiving right along with you!

The only time we had a ketone issue is early on when Caleb was ill and not eating and thus not getting much insulin at all. We don't check often either, but I know that "feeling".

You got me with "Thanks for staying with me, mom." Very tender.


This is such a great story to share. I don't think people realize how quickly this can come on and get out of control.

Congrats to all of you for handling it like champs. I'm sure that Subway was delicious.

sajabla said...

Whew- I can only imagine what it feels like to be a parent in that situation. I've only had ketones once since diagnosis - I was out of infusion sets due to a prescription error and didn't have any long acting insulin. My alarm didn't wake me up in the night to take the short acting shot. I am so glad he didn't have to go to the emergency room. Pumping is great but when you have mess ups like that it just gets frustrating - 2 bent cannulas? Craziness.

k2 said...

SO SCARY!
You did a great job and kept cool and focused- so hard to do!
Glad your all doing better and sending lots of ((HUGS)) your way!
Kelly K

Alexis-Nicole said...

Wow. You did a great job! Ive been there with my son, he was soo sick and thats what caused the vomiting and later ketones. Glad everything went well and hes all better!

We only have Keto urine stix, without insurance a blood ketone testing meter is so much $, but I really hope to get one, sounds so much easier.

Thank you for sharing your story!

Lindsey said...

So glad he's ok. You're ok. And subway was too.
After reading this I really think I should get a ketone kit too.
Thanks for posting this - as much as it might been a nightmare to relive it again as you posted it.
Take care,
Lindsey O.

Sandra Miller said...

thisiscaleb -

Thanks. I put this out there, partly because I needed to "talk" about it, and partly because I figured there are a lot of folks out there like us - families who rarely check for ketones, and when they do, don't see any...

Certainly was a wake up call for us.

sajabla -

Craziness is exactly what it felt like.

Kelly -

Thanks, but I gotta say I was dang close to losing my cool more than once that day.

Alexis-Nicole -

Thanks.

I picked up Joseph's Precision on Ebay. Here's one for $7.99. They have 10 available.

You can also get Blood ketone strips for $15 (a box of 10) on Ebay.

Hope this info helps.

Lindsey,

Thanks so much for the kind words.

And definitely invest in a blood ketone meter and strips. I was SO glad we had them.

Reyna said...

I was on the edge of my seat reading this. We have had a few ketone issues with Joe...and VOMIT BUGS...UGH. They are no fun and exhausting. Thank you for sharing.

Sunflower Hill Farm said...

Wow. I feel so ashamed that I take my kids health for granted. You know, I will say flippantly, "I'm so glad my kids are healthy" or "they may drive me nuts at times but at least they are healthy" but, wow. I can't even begin to imagine the stress of this terrible disease for all of you. You are brave and wonderful parents. Sending lots of love through the internet air waves today. Thank you for the reminder to be grateful. I miss chatting!

Sandra Miller said...

Reyna -

Sorry to hear you guys have been through this, too. You're so right. Not fun.

Jodi -

Thanks. And I miss chatting, too. We need to do something about that...

Bernard Farrell said...

Sandra, what a story. Like Colleen, I'm just exhausted reading about your day. Thank God for your instincts.

I'm so glad his BGs were better by the end of the day. Don't feel bad about the pump, recently I've had to replace several sets after 4-5 hours of numbers over 280. Still I never check for ketones, I'll have to get some strips for that.

Sandra Miller said...

Bernard -

Definitely get yourself some strips. I don't think we would have realized how serious this was if we didn't see those numbers on his ketone meter.

(Good to hear from you, by the way. Hope you're having a good summer. :-)

Sarah said...

I just ran across this blogpost and cried. I have a two year old whom develops ketones at the drop of a hat. It is exhausting and so sad to see. I know the fear and anxiety. I am happy that your child is fine.

Pam said...

Wow - scary. My daughter's thrown up once due to a bad site and high ketones. But once we gave her an injection she came right down. Stressful to be dealing with it all day. I think I would have brought my daughter in out of shear panic, but you did so much better to stay calm and handle it at home. Sounds like your son has one smart mom!

Sandra Miller said...

Sarah -

Thanks.

I can't imagine how hard that must be, with such a little one. Sending good thoughts your way and hugs.

Pam -

I don't know about that. :-)

We were so close to bringing him in. Frankly, I think we got lucky.

Karen said...

I can't even imagine how you made it through that!!! And who would ever have bet on two bent cannulas in a row? I'm so impressed by how you held it together and got those ketones flushed out.

I never tested for ketones until I started pumping. And even now, I just use the sticks. After reading your post and the comments, I'm going to get a blood ketone test kit.

Val said...

Scary! Glad everything worked out though.

Like most of the others who commented, I very rarely test for ketones - like only if over 350 twice and *not* from downing a pina colada... I do have the individually-wrapped urine strips and carry a few in my meter case.. just seldom get them out.

You can bet I will remember this post next time I see unexplained highs!

Sandra Miller said...

Karen -

Thanks. (But again, I was just barely holding it together.)

"After reading your post and the comments, I'm going to get a blood ketone test kit."

Awesome. That is exactly what I'd hoped folks would do after reading this.

Val -

Still amazing to me that this happened -- given that he's NEVER spilled more than small ketones before. Never thrown up from anything diabetes-related.

On the blood ketone meter: wouldn't have even had the thing if I hadn't discovered early on that urine ketostix give you hours-old information.

I think if we'd only had the urine sticks last week (and couldn't monitor changes in ketone levels as they happened), we would have definitely gone to the ER.


Sonya Doornbos said...

My son had this exact same thing happen to him yesterday! Only he had 1 bent cannula. He was at 493 with ketones...scary night.

I really liked how you mentioned that your son said thanks to you for staying with him!

Thanks for posting and Im glad I found your blog!

Anonymous said...

I am impressed! Did you talk to your endo about a script for zofran? We got one after our first bout with this, (thankfully have only had 2). It melts under the tongue and stops vomiting, helps the experience at least a little bit.

Mellena said...

Wow. Your post had me in tears. I am so glad everything turned around for Joseph. Glad to see you posting again and also to hear that your shoulder is getting better.

Mel

Sherry said...

Wow! I too rode the emotional roller coaster as I read this. I got choked up on several occasions. You did so well -- all of you. This reminds me of a similar “bent cannula” incident we had a while back. I blogged about it too. You know, if there is one thing I am truly thankful for with this disease, it’s our mother’s intuition. I have said it before and I’ll say it again; always listen to that inner voice. It is seldom wrong. ((HUGS)) to a fellow D-Mom.

LaurieH said...

I just recently found your blog. Our 9 yr old daughter was diagnosed with diabetes almost 2 years ago. We had an incident just a couple weeks ago where we got a call from sports camp because her blood sugar meter said she was "over 600." My husband and I both come running and, of course, her ketones were dark maroon- also a bent infusion set. We managed her at home and got it down within a few hrs, but it certainly was scary.

It is so interesting to me to read about how people respond so differently to high or low blood sugars. Our daughter only experiences feeling "shaky" at 68 as well as 32. She also has no symptoms at 350 or even "over 600." In some ways that is lucky... in other ways the symptoms can be useful.

Thanks for sharing.

Dawn said...

I am a mom of a newly diagnosed 7 year old. Wow, that had me on the edge of my seat with tears in my eyes.
Wow!
-Dawn

Jonna said...

Scary story! I have two children diagnosed with Type 1. My daughter (now 8) was diagnosed when she was 4, and my son was diagnosed last year at 2 yrs old. They're both pumping. I never leave the house without my ketone meter. My son has a soft cannula on his infusion set and develops ketones frequently. My daughter uses the Sure-T which has a needle under the skin instead of the cannula. She rarely has issues with her infusion set. Sometimes blood with clog her set, but not often. Because of his age, Ian does not have enough fat on his body to use the Sure-T and the needle constantly pokes into his muscle, causing pain. The blood ketone meters are invaluable to me, and I hope this blog stresses the importance of them, especially to anyone who is newly-diagnosed!

MrsABH said...

My little girl doesnt have a pump but we deal with keytones regularly.. Reading your story I felt like it was my own... I found so much comfort knowing its not just me who goes to pieces on the inside...

the MILKY way (Chrissy) said...

I just came upon your blog this morning. I read this post and I was on the edge of my seat! And when you tested for ketones and it was .9, I actually cried! I've been there, struggling to bring down those nasty ketones. You're a hero. Every day!

Teri said...

wow.. this was a lot to read.. SO scary..I felt like i was there with you all scared and worried! We have a 12 year old dx 7 months ago..and a 4 year old dx just 3 months ago.. It is good to read other peoples experiences because all of the stress of type one seems just too much for a mom to handle at times, but all you can do it keep going and keep it together for your kids...