Thursday, November 09, 2006

Another Day

He's 321, and cranky.

I can't really blame him. He's been high all night.

But thank goodness, no ketones.

And at least he's not low. He's had a lot of low blood sugars lately-- and some have been scary.

I twist off his insulin pump cap, pull out a half full cartridge of insulin, then press "Rewind."

Immediately we hear a whirring sound as the pump's threaded piston rod slowly spins down.

We're all very quiet this morning.

Even Evan says nothing as my hands move quickly-- tearing cellophane; puncturing a vial of insulin with a long needle; drawing fresh insulin into a new cartridge.

"Any air bubbles, Mommy?" she asks, lifting her head briefly from her brother's shoulder.

"Oh yes," I tell her as I repeatedly smack the side of the cartridge with a pen, and then quickly remove the needle and plunger from the cartridge, attach one end of a length of tubing to it, then insert a now full container of insulin into the pump.

I press "Load Cartridge."

As the piston rod whirs again-- rising toward the back of the cartridge -- I lift my head, and for a moment, just watch my two kids sitting together.

Joseph looks tired-- and wary.


He doesn't say a word.

Just waits for me to tell him it's time.

This is a ritual we repeat every three days-- sometimes sooner.

Like this morning -- when something is wrong.

When his blood sugar is dangerously high and isn't coming down.

"I'm ready, Bud."

Joseph puts Evan down, then I look to see where I'm going to insert the cannula-- the small (6 mm long) tube, or catheter that will be the entry point for the insulin coming from his pump.

He can do this himself-- has done it himself -- but prefers me to do it.

You see, he does so much of this stuff-- monitoring, figuring out carbs, thinking.

Always, thinking about how he's feeling.

With one hand, I hold the insertion device against the skin of his abdomen; with the other, I rub his back-- and breathe with him.

"Honey, now take a gentle breath in . . . and now a soft breath out. . . that's it . . . and now another breath in . . .

and then softly out . . . "

I squeeze the sides of the device, and with a loud snap, the introducer needle shoots into my son's belly-- he gasps.

Still holding the inserter against his stomach, I count slowly, "One.. two.. three.. four.. five.. " then pull out the long needle.

The cannula is now inside my son's body, and will (hopefully) remain there for another three days.

"Was that okay, Bud?"

"Sure, Mom," he says, but he's still wincing.

Sometimes it stings for a while after.

This is our life now-- or at least one piece of it.

The doctors said in the beginning that this would all become a routine.

"Like brushing your teeth," they told us. Just something we'd do.

Something he would do.

But you know, if we forget to brush our teeth, we don't get sick.

We don't die.

30 comments:

Kassie said...

my heart goes out to you guys, this day and every day.

Tekakwitha said...

Sandra,

Those pictures are beautiful. And your story of the daily 'routine' heartbreaking to read.

tek

Fairlight said...

((((Sandra))))

I have been lurking here for a while.I'm not really sure how I found your blog. My son was dxed two and a half years ago. He is 12 now. He is on Novolog and Lantus so far with good numbers. Puberty is rough!!!

I only found out yesterday that today is D-Blog Day. I don't have a D-Blog...actually my blog is my escape from diabetes...if there is such a thing. I have written a couple of short posts that I would like to share here, in support of you and all the other D-Bloggers. I hope it's OK.

Not My Usual Post

Since I have had my blog I have tried to fill it full of things that are uplifting;things that would bless someone. Today, I need to write about something else. I am sad. I have to go to the pharmacy today and pick up our youngest son's insulin and diabetic supplies. It's not something that is hard to do physically. The pharmacy staff couldn't be nicer. We always have the money to pay for it. Why does it bother me so much?

It bothers me because no twelve year old child should have a grocery sack full of refills each month. It bothers me because no child should have prescriptions with one year refills on them. It bothers me because it is a constant reminder that my child has diabetes. I have been doing this for two years and it still bothers me.

We deal with this disease every day and every night. It seems silly to me to think that going to the pharmacy is the one thing that I can't conquer. Sometimes when they call his name at the pick up window I want to say, "No, you've made a mistake. My son doesn't need those things," and leave.

The Big Orange Bottle

On Friday we had to take our youngest son for his appointment at the diabetic clinic at Children's Hospital. On his last visit, they had sent him home with a half-gallon sized orange jug. He was to use this to collect a 10 hour urine. The jug was in a orange hazardous waste plastic bag. After the specimen was collected, it had to be refrigerated.

We got up that morning and tried to figure out how in the world we were going to keep it cold during our three hour trip to the hospital. The jug was too tall to fit in the smaller coolers, and we didn't want to lay it on its side for fear of it leaking. We finally decided to put it in our largest chest type cooler. We left the jug in the bag. I added three cool packs to the bag and then secured the top with a rubber band. Now...how to get the jug to remain upright during the trip. Dear husband came up with the idea of taking two large beach towels and placing them around the jug in the cooler. This worked.

Now...all the way down there I kept thinking what would happen if we were stopped by the police. How would we explain the cooler with the big red jug of hazardous waste cradled in the towels? In this day of terrorism, would they really believe we were just carrying a urine sample to the clinic?

Anonymous said...

Sandra,

So very poignant and powerful in both words and pictures. My thoughts go out to your family and everyone living with this disease. Thank you for sharing a piece of your life with us.

Chops
(I came by way of Carey's 'Uphigh Downlow' Blog.)

Carey said...

Sandra,

So true about this not being like other daily routines. Hard to sugarcoat what you/we go through. Charlie told my wife this morning that he's had enough of the pump. Wants to go back to needles. Sigh. Thanks for sharing. Such a brave son you have.

Carey

Sandra Miller said...

Kassie & T-

Thanks.

Fairlight-

Thank you so much for de-lurking, and for sharing your posts here... your feelings about those monthly trips to the pharmacy are all too familiar.

(((Hugs)))

Chops-

And thank you so much for commenting.

Carey-

Yes, it is hard to sugarcoat. And some days you just can't.

On Charlie's desire to go back to needles-- if it helps at all, Joseph once said that he wanted to go back on shots-- and we let him (hoping desperately that he wouldn't want to stay on shots).

Within 24 hours, he wanted his pump back...

Hang in there.

mel said...

Sandra. I can't imagine what it's like to do these things with and for your son. I can only know what it feels like to do it for myself. I think it's a completely different feeling.

Thanks for sharing. You and all the other mothers share a part of diabetes that I never see.

Johnboy said...

Sandra, thanks for being real and sharing this day in the life.

Happy D-Blog Day.

Penny said...

Oh Sandra,
I'm sitting at my desk at work right now eating lunch and crying. Those pictures, that little face. It's all just too much.

I hate what our kids live with on a daily basis. Really, really hate it.

Kerri. said...

Oh Sandra,

Your pictures are beautiful. Your relationship with your son is even more beautiful. It aches, I imagine, to not be able to stop this disease from touching him. I can't understand your feelings, but I'd imagine that my mother can.

I'm thinking of you, and your inspiring son, today.

Kelsey said...

Sandra,

Thank you for sharing this moment with us.

You're an amazing mom and Joseph is such a great kid. You guys always make me smile :)

Shannon said...

You've made 2 points that hit me:

1. Thinking...always thinking. Never being able to rest from that.

2. As routine as brushing teeth. We can never skip a day of managing diabetes like we can with brushing teeth.

Sadly I share a day like this with you, but at the same time, it's so comforting to know that I do :)

Anonymous said...

Ugh, I just made a comment and it got lost in cyberspace ....

Thank you for posting about this. So many of us experience what you do with Joseph. Dani isn't on the pump - yet - but the experiences with this disease are all the same - the unexplained highs, the heart stopping lows. I hate it so much.

Hang in there - I hope Josephs sugars come down nicely for you.

Allison said...

My father always said that after awhile, diabetes became a routine. And sometimes I feel like diabetes is a routine. A routine of getting up, testing, counting carbs, bring along a meter, including extra supplies when going on vacation, using temp basal rates.

But whenever he said that, I always felt like I need to argue with him, to fight that declaration that diabetes is just a routine. Because the things most of us do as a routine, if we skipped them for a day wouldn't make us sick.

Thank you for putting that so eloquently. Now I know what to say.

Anonymous said...

Excellent post as usual, and great pictures.

Anonymous said...

Reading your blog and how you interact with Joseph and how you both manage his diabetes has meant more to me lately than I ever imagined. Thank you for sharing, and I hope I can do half as well as you do!

Anonymous said...

Sandra-
I share so many of your emotions. This is a totally random thought here-- Have you guys ever thought about using "emla" (sp?) cream for the infusion site? We use it for Bailey and she doesnt feel her "magic spot" go in. I was thinking Joseph may like it too... I told a friend of mine who is 22 with T1 about it and she now uses it too.

It may make it easier for the both of you.

Dee

Anonymous said...

Wow Sandra! Thank you for this post.

<- in tears

Scott K. Johnson said...

Those pictures are very powerful.

You and Joseph are real "troopers", and little sis just hanging out there too - very sweet.

Thinking of you guys!

gina said...

oh sandra, you and my mom are exactly the same. i know i say it all the time but you really are. one day hopefully it will all end.

Anonymous said...

Thank you for sharing a moment that I don't know much about (as far as changing an infusion set). So much routine for such a big purpose.

nicolep said...

Sandra,

I wasn't really able to respond to this earlier. I waited and waited and couldn't think of anything to say that might help. I hope it might help knowing that Joseph is strong - and that he'll grow to be as strong as any of us adults in the OC - with your help.

I saw something you posted on Kerri's blog - that Joseph told you that you don't understand what it's like. I guess he's right. But I know, Sandra, that when he gets older, when he's wiser - he'll know that you know how something feels that he has no clue about whatever - and he'll appreciate how strong you are - and how very much you've given him. I promise you this - I just know it.

N

Val said...

Excellent post, as usual. And I love the pictures. happy d-blog day.

Anonymous said...

Sending really huge hugs from one mama to the other. You have such a strong family, and such wonderful kids. We are fighting the good fight and it WILL pay off.

justme said...

touching.

hugs from the other side of the world to a wonderful mom and son.

xx

art-sweet said...

Sometimes I don't brush my teeth at night. Just because I can.

This was a beautiful, powerful post.

floreksa said...

Amazing pictures, Sandra....They tell the life so purely, so plainly.

rubbing said...

They wince and gasp but never complain. They are rocks.
Love your blog.
Chris

Martha said...

What a great post (as was the earlier one about the scary low). I'll be thinking about you guys. Lots of love. *hugs*

Anonymous said...

What these kids have to go through each and every day is far, far from "routine." We dislike site changes as well -- sometimes she really feels them, sometimes they go in relatively pain-free. We use the Unomedical comforts, the shortest ones. We have not tried a stomach site yet and have very little fat in that area. At some point, we will have to rotate but dreading that. Wonder if he has any fat above the buttock area? That area has worked very well for us with sils manually inserted. I also just found, after a solid 6 hour high, insulin would come out the tip, but when I, out of curiosity, bolused more insulin into the air, there was a blockage and it dripped out before getting to the end of the needle, dripping where the line meets the connector. She was getting SOME insulin, just not all. We get high a lot after site changes, then after a few hours she's okay, so it's hard to trouble shoot sometimes. I love reading your blog; can relate as she is 9; think you and especially your son are very brave for putting yourselves "out there" on the net; think your blogs are very well written; if you ever get the time, you should write a book. Thanks for informing us.