Friday, March 29, 2013

From Pod to Ping: God Blessed the Broken Road

We started Ella on the Omnipod 3 month after diagnosis in March 2012.
I'd researched several pumps and it was down to either the Animas Ping or the Omnipod.
We chose the Omnipod for several reasons, the biggest being the benefits of not having a tube.
 
Ella spends pretty much all summer in a bathing suit and I thought trips to the lake and long days spent swimming in the pool would be easier without dealing with a tube.
 
On a personal note, for some reason I had a real issue with imagining a tube being attached to my daughter.
 
Domestic Divo and I both wore the pod around for 3 days before we decided to go with it.
 
He wore it on his arm and beat it up at work, putting it through vigorous physical training exercises and all of the other activities a firefighter goes through during a 24-hour shift.
 
 
He did knock it once on a door and had to add a little extra tape to keep it secure, but he was pretty impressed overall.
 
 
 I wore it on my back-fat. Insertion was surprisingly painless, but it was super irritating when I was driving because of the spot it was in and I did notice a little tenderness the first day.
 Other than that, I pretty much forgot it was there and it stuck the entire time. So well, in fact, that removing it was the most painful part.
 
 
So, we went ahead and slapped one on Ella.
 
The pod system was so easy to use.
All you need to do a pod change is in one nice, neat little package and it's all automatic.
You fill the pump with insulin and it's pretty much auto-pilot from there. It primes itself, you stick it on, hit go and the needle inserts the cannula.
 
The menu and navigation is super easy, too. Very user-friendly.
 
I also really liked the built-in freestyle meter, although I did find that the standard code 16 gave me false low readings and I had to use code 17 for code 16 strips.I searched the web and found others with the same issue, so this wasn't unique to us and I just went with it. It worked.
 
As summer approached and Ella spent more time in the water, we noticed we had to do more and more to make the pod stick all 3 days: skin-prep, skin-tac, additional tape over the pod, constant taping down of the pod, arm bands, leg bands, sports tape, kinesiology tape...you name it, we tried it.
 
 And while I envied those who simply had to use a swipe of alcohol to make that bad boy stick for 3 days, I still continued to hold fast to our decision that the tubeless pump was worth it.
 
 
And then we started to notice a really bad rash under her pod site.
 
Every new site we rotated to would develop a rash within a few weeks. We tried rotating from toosh to arms to legs but the rashes just wouldn't clear up and eventually by the end of the year, we'd completely run out of usable skin. She had rashes like this on her toosh, arms & legs.
 

 
We tried every type of wipe and cream imaginable. Using alcohol wipes, not using alcohol wipes, hibacleanse, bard's barrier wipes, skin-tac, skin-prep, cavilon, tegaderm under the pod, IV3000 under the pod, hydro cortisone, corticosteroids, yada yada. We would pop a new pod on and within 24 hours she would be SCREAMING to take it off saying that it felt like, "10,000 mosquito bites."
 
So we were doing pod changes every day, and usually at night. And anyone that knows the pod knows about these things called "post pod change highs" -just google that phrase and you will get millions of hits of people complaining about this. For us, any time we did a pod change after 6:00pm, we would have high sugars lasting for HOURS. And I'm talking HIGH. Like 300's that wouldn't come down until after about 2 to 3 corrections. I've seen ketones from post-pod change highs. 
 
So, as you can imagine, not only were we getting no sleep but I also was so worried about her losing her toes and vision.  
 
We finally went back to to MDIs and I hauled her into the dermatologist's office because the rash just would not clear up. The dermatologist put her on a mild corticosteroid (aclovate), Epiceram Cream, benadryl at night, zyrtec during the day and an antibiotic because the rash was so bad it was infected which is why it wasn't clearing up.  
 
And finally, FINALLY, I thought: Why the heck am I doing this? This pump does not work for my daughter. I am SO SICK of all I have to do to make the dumb thing stick for 3 days and then I am SO SICK of seeing a nasty rash underneath it when it does come off and I am SO SICK of POST POD CHANGE HIGHS!!!
 
I was worried my insurance company wouldn't cover a new pump because usually their policy is one pump every 4 years. I didn't care. I was willing to pay $5,000 dollars out of pocket to get my kiddo on a new pump. Luckily, my insurance company accepted my Endo's Letter of Medical Necessity and the Animas Ping was delivered to my doorstep a few weeks after I started the process.
 
So, how is life with a tube?
 
NO BIG DEAL
 
Ella's favorite pump sites are tummie & leg. We reserve tooshie for the Dexcom.
We've tried a variety of pump pouches and currently her favorite is the double spi-belt so she can wear her pump and her Dexcom receiver.
 
(Livie makes us put a site on her, too. Don't worry - I cut off the cannula and just stick it on her)
 
We have to change out her site every 2 days or she WILL get a rash. But site changes are a snap and guess what - NO POST SITE CHANGE HIGH! Hollah!
 
So we do a site change every 2 days and a full change (insulin change + site change) every 4 days.
She says the site changes for the Omnipod hurt WAY MORE than the Animas site changes.
 
Overall, I actually like the Animas Ping more than the Omnipod.
And, since this was a really long post, I'm going to provide a nice little summary about what I like and dislike about both pumps:
 
Omnipod Likes:
 
1. Tubeless (duh)
2. Easy to use
3. Built-in freestyle meter
 
Omnipod Dislikes:
 
1. Post pod change highs.
2. Site changes hurt (according to Ella)
3. Getting the darned thing to stick for 3 days
4. Nasty rashes#1
5. The fact that #4 lead to more of #2 and more of #1 = NO SLEEP
6. Inability to disconnect without having to do a pod change
 
Animas Likes:
 
1. No post site change high. It's totally seamless
2.  Smaller insulin dosing (0.025 versus omnipod at 0.05)
3. Less wasted insulin
4. Pain-free site changes
5. Ability to disconnect and re-connect. LOVE!
 
Animas Dislikes:
 
1. Built-in One Touch Meter. I hate One Touch. Refuse to use it.
2. It requires a lot of button pushing
3. Not as user-friendly...takes a bit more time to learn
 
 
So, there you go. The story of how we started out with the pod but ended up falling in love with the ping. It was like we had to go through all we went through with the pod to realize that we were meant to be with the ping.  
 
I feel a song dedication coming on.
 
I set out on a narrow way many years ago
Hoping I would find true love with the Omnipod.
But pods fell off a time or two
Wiped my barriers and kept pushing through
I couldn't see how every rash pointed straight to you

Every sleepless night led me to where you are
The pods that broke my heart, they were like Northern stars
Pointing me on my way into your loving arms
This much I know is true
That God blessed the broken road
That led me straight to you
 
I think about the nights I spent just muddling through
I'd like to have the time I lost and give it back to you
But you just dose and take my hand
No hard feelings, you understand
It's all part of a grander plan that is coming true
 
Now I'm just bolusing
With my Animas Ping
This much I know is true
That God blessed the broken road
That led me straight to you


9 comments:

  1. I'm almost afraid this might happen to us... Elise's rashes are getting worse and the trips to the dermatologist aren't working. But it is good to hear that it has worked out for you guys!

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  2. We just discovered Johnson & Johnson tough pads that we use under Ella's dexcom sensor. No rash after 7 days - it's a miracle. I've often wondered if this would have worked under the Omnipod. Give it a try!

    ReplyDelete
  3. We just discovered Johnson & Johnson tough pads that we use under Ella's dexcom sensor. No rash after 7 days - it's a miracle. I've often wondered if this would have worked under the Omnipod. Give it a try!

    ReplyDelete
  4. I feel inordinately happy that we use the same pump! We also do not use the built-in meter.

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  5. Love the Ping but I only use the meter remote when I am wearing a dress or cannot easily access the pump. Otherwise, I prefer the Verio or iBGStar.

    I think I am the odd one out but in the past few months I have started reacting to my pump sites (on for 3-4 days) but I don't react to my Dexcom (on for 14+ days). Different adhesives?

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  6. Ugh, those rashes are way worse than anything I had imagined! So glad you are happy with the switch...though Bean was a bit concerned about losing her pod-buddy. ;)

    On another note...she sported her ladybug pod peelz earlier this week and I had to coordinate outfits so it would both match and show her "ella peelz."

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  7. Those rashes! Poor baby! (we solved a rash under Mio (Minimed)set by putting Opsite Flexifix under the set - insert right through the tape)

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