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It’s electric... boogie woggie, woggie

This hasn’t been the best week for Arden with her pump, she has experienced three static electricity malfunctions.  Some times if there is enough static in the air the pod can deactivate (it’s an infrequent occurrence).  In the last seven days that has happened at a dinner, the Franklin Institute and during Arden’s yoga class.  When said bed messing occurs the pump is rendered useless and must be changed immediately so that Arden’s insulin supply can be reestablished.  No doubt this sucks but still I must say that it’s a small price to pay for the positives that the OmniPod brings to our lives, things certainly could be worse.  It’s all perspective and attitude.

As Arden grows, new sites appear

If I’m being honest I couldn’t find one healthcare professional to say that using the OmniPod for Arden was a good idea.  They said that she was too small and that her body style would be counterproductive to the way that the OmniPod inserts it’s cannula.  The people that work for Insulet (Omni maker) disagreed and most importantly I disagreed.  

I wanted Arden to use the OmniPod for a few distinct reasons.  Of all the insulin pumps on the market I found it to be the most forward thinking, it takes the best advantage of available technology IMO, it’s BG tester is made by Freestyle and we use and get consistently accurate BGs with Freestyle and it doesn’t have a tube.  Plus, when you choose you have to choose wisely as your insurance company won’t tolerate switching pumps as the are very expensive initially.  

I’m am elated to be able to continue to report that we made the right decision.  Now that Arden is getting bigger her arms are now wide enough to support the pod though as that growth spurt gave us a new site with one hand it took away another site with the other.  Arden now has even less body fat on her abdomen, which is to say she has none - but that’s okay because we gained the arms. 

Looking back I think that what health professionals weren’t aware that the OmniPod will take a bit of extra planning for a few years until Arden gets bigger.  It will be slightly more difficult to find good sites but it is not impossible or even difficult to use on a small child.  What I could tell them now (and am telling all of you) is that the benefits that the OmniPod provides far exceed any impediments that it carries.  I can’t imagine sending Arden to school if she was still getting injections, I think that scenario would have been a total failure, I think we would have seen constant lows and that her ability to learn would have been crushed by the demands of her care.   Arden has a great insulin delivery system and she isn’t tethered to a pump control unit by a tube.  For my money (well for Blue Cross’s money and my copay) you can’t do better then the OmniPod.  I wish I could give one to every child that wants an insulin pump and can’t afford one.  It’s a life-changer.

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The following are archived comments from this post. You can post new comments below.

Sophia's Mom

I just discovered your blog and I love it, thank you!  My Sophia is 2 3/4 (she'll be 3 in July) and she was diagnosed at 21 months, just over a year ago.  We started Omnipod a month ago and it is amazing.  For anyone considering it for a child, don't hesitate because of body type.  Sophia is extremely thin (28 lbs and 39 inches) and we have had very few issues with finding good sites.  Her A1C was 9.5 in February and I expect it to be around 8 in May.

Monday, April 19, 2010 - 04:17 PM

Time and distance lend perspective

It has been six months since Arden made the switch to the OmniPod insulin pump.

The move to a pump has had many benefits, including lower A1C, a steading of her overnight BG readings and of course the disappearance of multiple daily injections.  But there is another benefit that I have recently become aware of... 

We have less stress.

When Arden was diagnosed we did what any of you would do, we followed directions.  We learned how to give an injection and we gave them everyday, most days eight times or more.  I didn’t realize then what I can see now.  Being thrust into a life or death situation takes away the luxury of contemplation.  I imagine being drafted to fight is similar in that you are handed a gun, taught too briefly how and when to use it and then thrown into the fray.  If you dare take the time to question what you’ve been told... you’re dead.

Similarly, we gave Arden her shots.  Two in the morning when she got out of bed.  Another three hours later, then at 2pm, 4pm, 6:30 and two before bed.  Eight times a day we stuck a needle into Arden, my best estimate is that she was stuck six thousand times in the first two years.  I can tell you now what I could not perhaps for my own sanity have admitted then.  It broke my heart every time.  I probably gave 90% of those injections and the experience has left me with an indescribably feeling in my gut.  

Every time Arden eats, drinks, gets into a car, runs, walks, gets quiet, is sad, trips or when it’s just been too long since one of those things has happened, she needs to be accessed.  In those moments it’s as if someone whispers over your shoulder, “Arden has diabetes”.  When I open my eyes at 4am because I heard a noise outside, my first thought is, “I should check Arden”.  When I’m standing in left field watching Cole play baseball and Arden runs over to ask for a dollar... I hear the whisper.  As oppressive as this fact of our life is, it was compounded by the injections. Because after all of the waiting, checking, testing and worrying I had to take out a vial of insulin.  The vial is swabbed with alcohol and the needle is uncapped while the numbers run through your head, “her BG is 189, there is 40 minutes left on the last injection, she wants to eat a hot dog, hot dogs have no carbs but the roll is 23 carbs unless it’s a potato roll and then it’s 26, what if she doesn’t eat the entire hot dog?".  Then I hold the vial up to my face and extract the insulin, tap tap on the needle, turn to my baby and jam it into her body.  8 times a day.  I can tell you that takes a toll on your soul.  I couldn’t say any of this before the OmniPod because admitting it would have taken away my ability to give those injections - but that is all gone now.

Today, we test Arden and tell the pump how many carbs she will eat and then press a button.  Arden’s insulin pump didn’t take all of the worry out of diabetes but it has significantly lessened our stress.  

Insulin pumps aren’t covered by everyone’s insurance and they are quite expensive.  Children who are un or underinsured are incapably of getting the relief that I described here...  I have been profoundly impacted by the benefits of insulin pumping and saddened by the fact that they aren’t, because of financial constraints, available to everyone who wants one.  I am at the moment not sure how but I want to find a way to change that...

Update on 2011-09-24 14:41 by Scott Benner

This blog was linked via Twitter and FaceBook on 9/24/11 in response to a conversation that I had with one of the readers. If you are reading it now... it is not been six months since Arden switch from MDI to OmniPod as the blog indicates but over two years.

Five Months Later - A1 Cya later

Just a quick update to let you all know that Arden’s A1c level has fallen from 8.5 to 8 since see started using an insulin pump!  An 8 indicates that Arden’s average BG is about 205 which is a bit high but still in range for her age group.  Hopefully as we begin to understand some of the pump’s more intricate functions we can bring her number down even more.  The OmniPod should definitely be credited with this successes.

More info about A1c - Hemoglobin A, a protein found inside red blood cells, carries oxygen throughout the body. When there is glucose in the bloodstream, it can actually stick (glycate) to the hemoglobin A protein. More glucose in the blood means that more glucose sticks to hemoglobin, and a higher percent of hemoglobin proteins become glycated.

Once glucose sticks to a hemoglobin protein, it typically remains for the lifespan of the hemoglobin A protein — as long as 120 days. Therefore, at any moment, the glucose attached to the hemoglobin A protein reflects the level of the blood sugar over the last two to three months.

The A1c test measures how much glucose is actually stuck to hemoglobin A, or more specifically, what percent of hemoglobin proteins are glycated. Thus, having a 7% A1c means that 7% of the hemoglobin proteins are glycated.