Monday, November 15, 2010

T1D 365:5 The Insulin Pump


Oh how we struggled to make the decision to get an insulin pump to manage Sugar Boy’s Diabetes.  As a mother it was the thought of having something physically attached to my son that I couldn’t handle.  I remember one night about a week before we got our pump.  We had gone through the approval process with our insurance, we had already ordered it, and I knew it was on its way.   It was nearing bed time and I was getting jammies on the twins (they were almost 3 yrs old at the time), and Sugar Boy got away from me as soon as he was completely naked and started running around and doing the "nudie dance".  While laughing at his antics I remember looking at his perfect little body and thinking, "Never again will he look like that... after we get the pump it will be attached to him and that will be it."  I was overcome with sadness at the thought, despite the fact that I continued to laugh and clap to his dance.   Beyond that, I was concerned about people staring at him and noticing the lump under his clothing where his pump pack would be attached around his waist.  I absolutely HATED the thought of having that thing attached to him.    


We had chosen the Medtronic insulin pump, not because we felt it was the best one, but because it’s the one our Endo said we should go with.  Honestly we were surprised when we learned there were other options out there.  At that time we were not yet connected with the DOC and Sugar Boy was the only child we knew with Type1 Diabetes, so we just sort of blindly trusted our Endo to lead us in the right direction.  We were lucky.  He did indeed choose the best pump for us.  Later when we did the research we probably should have done PRIOR to purchasing the pump we were able to confidently determine that if we had chosen for ourselves, we would have chosen to go with Medtronic.   

 The first pump training meeting we had with our CDE consisted of learning how to work the pump, insert the infusion set, and figuring out the best way to contain the tubing that travels between the pump and the site on his tummy where the infusion set attached.  I was adamant that I didnt want the tubing visible... and I was also concerned that he would catch it on things (like his sister!!!) while he was playing.  We ended up coiling it up and tucking it into the pump pack along with his pump.   I remember walking out of the hospital and thinking it didn’t look as HUGE on him as I expected it to.  But it was noticeable.  He was quite proud of it.  He had already forgotten about the ordeal we had just gone through to insert the infusion set that first time.  My hands were still shaking…. But he was completely over it.  The first place we went after that was to watch Sugar Boy’s cousin at one of his swim lessons.  His uncle and other cousin were there.  Sugar boy showed them his pump.  That’s when I knew that it didn’t matter what it looked like – it was going to be okay.


For that first week the pump had saline in the reservoir instead of insulin.  So, we continued to manage Sugar Boys Diabetes with MDI’s and we practiced using the pump by delivering saline into his body.  It was STRESSFULL!  That entire week all I could think about was getting through that week because we were now doing twice the work!  And when you are a working parent, with three yr old twins… that’s HUGE!  The worst part of it was it was like re-learning Diabetes all over again.  Suddenly basals and bolus ratios and insulin sensitivity levels took on a whole new dimension.  I remember not trusting the pump to decide corrections (Hell, who am I kidding?  I still don’t always trust it… but darn if the damn thing is not usually right on the money!).  We had gotten so used to doing the math ourselves (and looking back I can now admit that we were often over-zealous in some of the corrections we were giving on MDI, causing wicked lows) that it was a hard move giving over that control to a piece of equipment that felt foreign and cold.  We made it through our first home site change and Sugar Boy didn’t shed a single tear.  When we were done he said, “That not hurt Mommy!!”  with a HUGE smile on his face.  My big brave boy.
We went back for our second bit of training and we filled the reservoir with insulin.  We have never looked back.  Right away the freedom we experienced in being able to let him eat freely without worry of how many shots he would need to receive was amazing.  We found that quickly blousing from the pump at a restaurant beat having to do the math, fill a syringe and give a shot any day.  It was only after doing this a couple of times that I realized that my worst fear – the one where people would stare because he was wearing a pump – was so silly because we now actually attracted a lot LESS attention being able to quickly dose him from the pump.  We have now been on the pump for almost a year and a half.  And it was honestly the BEST decision we have ever made regarding Sugar Boys Diabetes and how we manage his care. 

13 comments:

  1. Donna...thanks for sharing your pump story. That is exactly how I feel with Adam and getting him a pump - I know it will be the best thing, but I'm scared as heck to get started with it! But I will be so happy not to have to tell him he can't eat something because he'll need a shot. Sometimes I still can't believe this is our life...

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  2. I had the same thoughts about not wanting something attached to my kid 24/7. Tough decision, but looking back, I know it was definitely the right one.

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  3. YES! I felt the same way and you and so many others helped give me the encouragement I needed to make the move to the pump. I am still so surprised that I don't really notice it that much and that my sweet boy still seems very much the same! I would not want to go back to shots...

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  4. It still make me sad that Bryce has to have these things attached to him but he has NEVER complained...actually he thinks his pump packs are cool, like a robot with a battery pack.

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  5. Justin shows his off ALL.THE.TIME!
    I am still in awe over it. I am always pulling his shirt down and he props it right back up so you can see his pump :)

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  6. This is such a great post for those of us still on MDI.

    I'm still struggling with the thought of something attached to Jack 24/7, though that's not why he doesn't have a pump yet.

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  7. Inspiration to take the leap! I'm sure this post is going to be so helpful for those still struggling with their decision!

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  8. I too...hated the thought of something "hooked" to Joe all the time, but, you know...I have never looked back. It is by far the BEST thing for our family. I would not change pumping for MDI's for anything...for us it is RIGHT.

    Thanks for posting this Donna...I think it will help so many who are on the fence regarding this important decision for their family.

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  9. I completely relate to your dilemma...I HATED the idea of a pump being attached to my child 24/7.

    Thank goodness for an endo who gently (yet FIRMLY) pushed the issue. She knew we needed an insulin pump in our life and wouldn't let me brush it off.

    The timing was right - the insurance Gods were aligned just right - it was TIME and she knew it.

    I'm incredibly thankful for our insulin pump...but...every now and then seeing that pump pack still tugs at my heart.

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  10. One of the reasons we went with OmniPod was that we didn't want tubing and the pump attached to our young child all the time. (And that's nothing against anyone's else's choice of pump...we each choose the right one given the information we have at the time.)

    But I'm with you, I would NEVER go back to MDI!

    I'm a math person, but I so appreciate not having as many calculations at each meal!

    And she can have SECONDS!

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  11. That week on saline is REALLY hard. I remember it well.

    I would also NEVER go back to MDI. I Love pumping. Even if it does make it more visible to everyone else.

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  12. thank you for posting this...my 6 yr old daughter has FINALLY told me that she is ready for a pump. I am SO scared and nervous...but really happy too.

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  13. Thank you for your insight. We are currently in the process of reviewing and comparing pumps.

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