Thursday, June 20, 2013

100 days! Pump Start

One paper link for each insulin shot left before PumpStart

It's been 100 days since Eleanor was diagnosed with Type 1 diabetes. What better way to celebrate than with Pump Start Up.  We were so excited that we made a paper chain: one link for each shot remaining until the pump, and she tore one off after each insulin injection.  It was a fun tangible way to count down the days and sticks.

I’d heard horror stories about Pump Start up. More than one parent had said it was just as disruptive and world-rocking as diagnosis.  One friend even said, “I wanted to throw the pump out the window those first couple of weeks.”  I remained dubious.  How could it possibly be as bad as diagnosis?  My theory is that most people have a bigger gap between diagnosis and Pump Start up and they’ve simply forgotten just how horrible diagnosis really was (Sounds a lot like childbirth!).  With only 100 days between… trust me… it was NOT as disorienting or overwhelming as diagnosis.  In fact, It’s already brought welcome relief.

We had the distinct advantage of being prepared.  After hearing what folks were telling me, I went out of my way to be sure I knew what I was doing.  In the days since diagnosis, I've read all of the following books:
Eleanor opening up the shipment
from Insulet

Think Like a Pancreas by Gary Scheiner
Pumping Insulin by John Walsh
Type 1 Diabetes In Children, Adolescents and Young Adults by Ragnar Hanas (this book has my favorite definition of LADA ever!)

However, I didn't catch too many Ranger games so far this season. <sigh> I'm sure Nelly Cruz still knows I love him. </sigh>

 For additional preparation, as soon as I heard we had insurance approval,

1. I downloaded the PDF of the Omnipod User Guide, and began reading it from cover to cover. 

2. When the device actually arrived,  I fired it up, made an attempt to  program the settings to match her current MDI basal and bolus doses.  We were able to “fake” bolus without activating a pod, so we did. 

3. We did at least two weeks of “Simul-Bolus” with our Omnipod PDM (with no pod activated) while continuing with MDI.  So, we had lots of practice.  

she's listening to the ticking on Michael's pod as
it delivers a "bolus" of saline.
differing amounts of pink showing in the window is
apparently acceptable.
I guess it worked, we were actually telling the CDE a couple of things at our education session.  (But that’s probably because she’s still getting the hang of the new Omnipod system, since they just switched over at the first of the year - we’ll cut her some slack, while we still take some credit for being prepared).

We spent the weekend with both Michael and her wearing an activated pods full of saline. We did a pod change ourselves on Saturday morning. We did run into one hiccup.  When Eleanor pushed the "start" button, we heard all the clicks, and beeps just the way we were supposed to, and we could see through the window that the cannula was inserted.  By this point between the three of us, this was our 4th saline pod, and we noticed that the pink showing through the window looked different from any practice pod we'd ever done before.  In all the others most of the pink was visible through the window, and in the one we put on Eleanor on Saturday morning only about 1/3 of the pink was showing, so we called Customer Support.  He told us it was probably okay, but since it was full of saline, there wasn't really anyway to tell for sure.  Obviously if it had been a live pod, we'd be able to tell pretty quickly if she was getting insulin or not.  So, we left it as is, and came away from the experience with a little more knowledge, apparently the amount of pink that shows through the window can vary a bit. Now we know.
The saline filled pod… decorated with Niall Horan
and Hello Kitty.  And a bit of face paint on the tape.

We had the fortune of good timing.  (Although, to be honest, it wasn’t good fortune, it was the result of my efforts to get things done when and how I wanted them done.)  Eleanor’s brothers were both at camp all week, so she had us all to herself.  What better way to start up on the pump, than when she had our undivided attention.  That wasn’t part of my plan, but it turned out to be a blessing.  My big goal was to get her going on the pump before we flew out on vacation, and that has worked out as well.  By the time we leave, we should all be comfortable. 

We were all ready with our “bling basket.” She likes to decorate both the Dexcom and the Omnipods as much as possible.


Then the big day was here!  On Tuesday Morning we woke up Eleanor and drove over the Children's Legacy Hospital in Plano.  First they weighed her and took her PDM and Dexcom.

They also did her Hemoglobin A1C - wow.  We must be doing something right, because it was 6.  Woot!!! (For the record, it was 11 at diagnosis) Perhaps our girl is not quite so glycosylated!


Eleanor ate her breakfast at the hospital. She
was ravenous by the time she got to eat it.
Then we went into a room and the CDE quickly checked over the settings.  Then she watched while we deactivated the saline pod, filled the new pod with real life insulin, put it on Eleanor and let her push "start." We had a few tears when she moved down off the table, I assume the cannula shifted position in her arm.  She actually had her arms up over her head when we did the insertion, so I'm sure it pushed further in when she put them down at her sides. (Note: don't do that again) The tears didn't last long.

We stopped on our way out for
a pic next to her favorite color.
And we were off!  We'd packed her breakfast, so we used the PDM to bolus and she sat at the desk in the exam room and ate her breakfast, while we finished up our education.  We went over all the safeguards and instructions.  We passed our quiz with flying colors.  She was happy, we were happy.  We had our marching orders and we were on our way.

There are settings to be adjusted.  She's already had an unacceptable post breakfast spike both days, but we'll get that fixed up in due course.  She had a low before dinner last night and today the CDE made a change to her basal rates to accommodate that.  That's it, we just make lots of notes, do lots of BG tests, and report back to her with our recommendations for changes, and she'll say "yay" or "nay," and that's how we learn to fly on our own.

 
The "bling basket" makes it fun!
All in all, we are off to a great start! 


I would say that one advantage to starting the pump so quickly after diagnosis is that we are still discombobulated from diagnosis.  I can't in all fairness say that starting the pump has been anything but a breeze.  

And not only that, but Miss Eleanor woke up the next day and decided she was going to take over her waking hours finger pokes and testing.  She loves the PDM, she's named it "Pumpy Purple," although it has a name change to "Pumpy Pink" when she changes skin colors.  We've made a real effort to provide bling for it and the Dexcom as well.  Gotta make that lemonade anywhere you can find it.  Oh happy day!
"Pumpy Purple" is her new BFF. 
Her first real working Pod. Yay!!

8 comments:

  1. Yay Eleanor!
    Hope it is working out for you. I'd read all those same books before Amy started her pump. We were a year after diagnosis before starting. She just started her CGM last week and she is doing awesome with it. I love how it alerts us with an alarm for predicting lows. She has a pink Medtronic Paradigm Veo, which she calls Pumpie. She has half day of school left tomorrow, then I'd say their will be some adjustments to make to her basals.
    Love the Bling!

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    Replies
    1. We love the CGM too. We actually got it first, and Michael likes it so much, he's going to ask his endocrinologist for one at his appointment in July. Our clinic doesn't usually start folks on pumps this quickly, but I was pretty insistent. She takes such tiny doses, I really wanted the granularity we can get with a pump.

      We have seen quite a few highs, and I'm looking forward to making some changes when we send in our numbers today, so in that way it's like diagnosis, because it took us a while to get her doses settled in. I'm just not stressed about the highs, I don't like them, but we'll fix them.

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    2. I'm not sure if they have a time that they usually start here. We weren't in any rush. Amy was in kindergarten, and the needles she was taking was working fine....until they weren't. She wasn't on Multiple daily injections either, so we really didn't have much flexibility. Then, a Medtronic rep came up for a visit, and my husband was sold. He didn't realize what a pump could do. We had a lot of very high 2pm readings, when the NPH from the morning was wearing off before supper, so we were at the point of asking for some sort of change.
      I'm so happy we went with the pump. I don't stress about the highs, especially the post breakfast ones, we seem to get that a lot and it does come down. I've started experimenting with the special features for giving insulin like the dual and square wave. We did have one high that didn't come down and we ended up doing a site change at 3am. not too bad for 5 months.

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    3. Sure, sounds like its going well. I'm looking forward to playing with some of those fancy bolus features too. Eleanor eats a lot of pizza, and I don't want her to have to skip it, or limit it. If we can get the bolus figured out for pizza, my life will be complete. (Joke!)

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  2. The bling is totally awesome!

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  3. Thank you Donna! It does make it more fun. We have a huge pile of bling for it, so every pod can be a bit different.

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  4. Thanks for sharing! We were all set to start our saline trial when our CDE realized my daughter's basal needs were too small for the pod to deliver. She is slowly coming out of honeymoon so it won't be long.

    http://lancetsandlollipops.com/

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    Replies
    1. Hi Danielle! Thanks for your post! How are things going now? We were kind of lucky I think. Eleanor did not seem to have much of a honeymoon. She seemed to be hit with a higher need of insulin pretty early on. It's not a TON yet, but it's higher than a lot of newly diagnosed kids I've run across in the DOC. I know of several families whose children can even have meals that, if they are low enough in carbs, don't require a bolus dose, which is beyond all reason for me to consider. We don't let Eleanor have a 4 carb sugar free popsicle without bolusing for it. Which basically means we may as well just give her the full sugar version, because I'd rather her little body NOT be full of artificial sweeteners if we've got to bolus anyway!

      Anyway, thanks for posting. I just posted on your blog as well. Don't be a stranger. It's good to have connections out here in these crazy new waters we are navigating.

      Keep me posted on when Eliza gets to start the pod! We're going to have a blog drawing pretty soon and give away some pod bling, so you can come back and enter the drawing!

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