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Tuesday, July 30, 2013

Four Years....

I'm sure you are thinking this will be something about diabetes but you are totally WRONG!!  Yesterday was Courtney's FOURTH birthday!!  WOW!!  Hard to believe the little monkey is 4 years old.  Time sure goes by WAY too fast.  She had a party this weekend with friends and family.  We were very fortunate to have the weather hold out.  It was raining at the beginning of the party and after cake the sun came out.  She was so happy after all it was a swimming party.  On her actual birthday she went to the cone and rode rides, went to Red Robin for dinner and more swimming!  Perfect Day!
Here are a few pics from this weekend...

Our Birthday Princess

Monkey!

Monkey Pinata

Whacking it!

A few presents

All the candles blown out!

After swimming!
My Family





Thursday, July 25, 2013

12 pounds

Today a box came.  A 12 pound box address to Brianna.  This box comes every 3 months, with all the supplies to help keep Brianna alive. Nothing fun or exciting, although, I am always excited to see all the necessary supplies.  It's always a good feeling to know you have what you need to keep your child safe and alive.  Might seem a little drastic but really she needs each of these supplies.
Plain and simple a 14x14x14 box.


What's inside that box??



What are all those supplies??  Here is a list of all of it....

1300 Freestyle Test Strips-  okay they sent the lite ones AGAIN.  That's really starting to get annoying!  But that's a whole other post!
1326 Accu-Chek Lancets
20 AAA Batteries- this is for her PDM and her CGM
1 Bottle Of Control Solution
1 Accu-Chek Fast- Clix Lancet Device
60 Blood Ketone Test Strips
30 Minimed Sensors for the CGM
5 boxes of Omnipods- 10 in a box so 50 pods
1 Box of Adhesive Remover

That's today's post. Short, sweet and to the point.  Now to get on the phone and have the supply company send the correct test strips so we can use them!  Yes, I know the Lite ones work but that's not what is recommended.

Again I want to thank everyone for reading, commenting and following my blog!  I would love to start doing some giveaways, but need more followers to do that, sooooo FOLLOW us. 

Also what are some things you would like to see me write about?

Thursday, July 11, 2013

FIVE Weeks Already??

Well, I actually found time to write this!

Brianna has been using the new Omnipod System for five weeks now.  So the big question is what do we think???

Well, we love it!  She really does.  There are few negatives but lots of positive.  Now to try to figure out where to start....

For those of you who don't know about the pod, it is a tubeless insulin pump.  It theoretically will work for 3 days- 72 hours- and MUST be changed.  You are given eight hours as a grace period so technically it will fully shut off at the 80 hour mark.  Which for us is not a huge deal.  I typically was changing her sites every 2-3 days anyway just to keep scar tissue from forming and the sites in general seemed to heal quicker the less time they were in.  But this is something some need to consider.  I have heard some like sites to last longer or only change twice a week, so this might not be the best option for you!  Plus it only holds 200 units, which is more then enough for Brianna but people with T1 that use a lot of insulin will have to change more often.  I know Minimed's larger pump will hold 300 units.

So as of today, she has had 14 sites changes now with 3 failures.  Yes THREE!!  Doesn't seem like a ton, but we only had like 3 bad sites when she was using Minimed for 3 YEARS!!  What happened?  Why did they go bad?  Honestly, who knows?  The first change we did, we changed it right around the 72 hour mark.  That day we had been swimming a lot.  She got out to eat dinner.  We bolused as normal, then decided to do a pod change before she got back in the pool.  Everything I thought went fine, no issues.  Then about an hour after it was inserted in was screeching!!   We call it the sound of death, because when you hear that sound, nothing can be done besides pulling the pod.  Basically it sensed there was something wrong with the delivery of insulin and shut down.  That one said there was an occlusion- meaning something was blocking the delivery of insulin.  When I pulled it off the cannula looked fine.  So I really don't know what happened with it.  Either way,  I was not happy and even more Brianna was NOT happy at all. I called Insulet and they noted what happened and sent us a replacement pod.  We sent back the old pod for them to test.  The next 2-3 pod changes were fine.

The next failure happened Saturday morning when we were getting ready to go to Austin's baseball game.  Of course we were in a hurry.  I had Brianna bolus her breakfast and about 3/4 into the bolus we got a no delivery and the pod shut down.  Again called them and they replaced it.  The next failure was two days later.   Same thing happened we had just given Brianna a bolus and 3/4 of it went in and then we got a no delivery and it shut off.  With the third pod failure I was really starting to doubt we made a good decision for Brianna. We need a reliable pump.

I really wanted to know why the pods were failing and what I could do to stop it!  I called after each failure.  They noted all the information and sent replacement pods.  They said they really didn't know what was causing the issues, but they run the pods we send back through tests to see what went wrong.  Because they sent us replacement ones, we weren't really out anything other then insulin.  Which is starting to add up with all the pods that are failing.

For the pod to be activated there has to be a minimum of 85 units added.  Again this might be an issue for some if the person with diabetes uses a low amount of insulin you might end up wasting a lot.  I have been filling her's with anywhere better 100-125 units.  I get a little paranoid about running out and having to do a change early.  Hey, you never know when she might go crazy and eat tons of carbs  LOL!

Brianna uses Apidra insulin and that was another concern of mine.  I had heard from several people that Apidra tended to clog or crystallize in the cannula after 48 hours, or with some right away.  Apidra works really well for Brianna so I didn't want to have to switch insulin. She was on Novolog prior, but has been using Apidra for almost 3 years now.  So far we have had no issues with leaving Apidra in the pump for 3 days.  We never did with Minimed either.  So that was a huge weight lifted off my shoulders.  Another thing to consider with the insulin and the pod is the pod will not start up with insulin under 50 degrees.  We leave her insulin in the fridge even after we open it- works best for us.  So I just take the insulin out 30 minutes before a change so it can warm up and we have had no issues.  So as far as insulin goes no worries there!

Podding falling off all the time!  This was a HUGE concern for me.  We have a pool and swim all the time- if it would EVER stop raining here!  Part of the reason we switched to the pod was to make swimming easier for her, so if they are falling off all the time that wouldn't be worth it.  She has swam countless times in the last month and ALL the pods have held on.  In fact they are near next to impossible to come off!  The first time she got into the pool, I told hubby maybe we should cover the pod, I would really hate for it to fall off.  He said wait and see.  So we did- again it would have been SO his fault if it fell off.  But it didn't.  She jumped in like a crazy, swam, and played rough. That pod held on tight!  I was impressed.  I will say the edge of the tape does occasionally come up from where her pants rub on it, but NO issues with it coming off.  So another worry put to rest.

If you look close you can see the pod on her right side.

Hardly noticeable. 


Removing the pod.  Here I was SO worried that it would be falling off all the time, I never imagined it won't come off!   They are obviously significant big then a little site so there is a large taped down area.  When we removed her old sites we just pulled quickly and ripped it off.  Well the first time we have to remove the pod I did the same thing and just pulled it off.  I think I took a layer of her skin off.  She SCREAMED!  OUCH!! So since then we have been using Unisolve to remove her sites.  It seems to be working well.  There is a significant amount of glue that is left on her skin.  It is quite an ordeal to get that stuff off!  For us, wiping the glue with the Unisolve pad, then alcohol and then using a dry cloth seems to work.

I think I'm going to end the post there for today...
I have so much more I want to write about.  Hopefully will post again in the next week!!

Tuesday, July 2, 2013

Cut the Cord

For anyone that know me, knows I am Minimed's BIGGEST supporter.  I LOVE their products.  I love that their pump and CGM are all in one unit.  It makes it so easy for Brianna to only carry around one device.  I love the ease of use.  Brianna has been on the Minimed Revel pump for a little over three years, and the CGM almost three years.  We have the Guardian and MySentry.  Seriously LOVE minimed and all their products.

BUT a few months ago we went to a JDRF event and Omnipod was there.  We looked at it and honestly I didn't think much of it.  Yes, no tubes would be nice but at that time they still only had the bigger pods, so I didn't really think much of it.  My husband and I talked a little about it in the car but it ended there, or so I thought...

Then in March, knowing swim season was coming up, hubby asked, okay I'm going to blame him for this one, have you thought any more about trying Omnipod?  WHAT?!?!  We swim a LOT during the summer.  Brianna's pump is not water proof which isn't a huge deal as she likes the freedom while swimming of not having something attached to her, but in the same sentence I must say no pump no basal.  For the last two swim seasons, I have been giving her missed basal as a bolus right before I disconnect her.  BUT do you know how hard it is to give 0.50 units when she's 70 or 90?  If I don't hours later she will be in the 200's-300's and holding there.  So it worked.  I knew what to do.  Once an hour I would hook her up and give her the missed basal as a bolus and off she would swim.  Well, then she would want to eat, back out of the pool and hook up and give insulin she needs for what she was eating.  Not a huge deal.  But it was something I was comfortable doing, I knew how to do it.  But I was the only one doing it.  Not for one second I want you to think I don't want to do it, because if it is what she needs then I will but then my thoughts were what if I'm not there, what if she is at a friends house?  I can't expect someone else to do what I do.

So with that I agreed I would call and get information about Omnipod and the Cut the Cord Program.  I seriously felt and feel like a traitor.  They were very helpful and told me that for a certain price we could get the PDM and then when it was time to refill pump supplies instead of sites and reservoirs we would get pods.  Seemed easy enough. 

I am someone though, that is under the mind set if something is working then why switch?  Her A1C for the last year has been in the 5's.  She was happy with the pump and CGM.  Why switch?  I had talked to several people that were on the pods.  I didn't want to know the good things about it- I wanted to know what could go wrong!  Some of my fears- the site would fall off all the time.  The PDM meter would be "off" from what I was use to and would cause a dramatic increase in her A1C.  Many people also talked about super high numbers right after a pod change- I didn't want to deal with highs every 2-3 days just from changing her site.  Pod size was another concern, I didn't want this HUGE thing on her.  Probably the thing I was most of afraid of was what if she hates it??

With all that being said, in March we decided to go for it.  Brianna was VERY unsure of this- really I don't think she wanted to try it at all.  We told her several times that if she hated or even didn't like it a little we would switch back right way and wouldn't try it again.  I wanted HER to feel good about the switch after all it was all about making HER life easier.

We ordered Pods in May, the next time we were eligible for supplies, and it was a done deal!  We set an appointment for the beginning of June to meet with a nurse educator about transitioning to the pod from the pump.  I probably could have done it myself but it was recommended we go so we did.

So June 6th, we went and transitioned from the pump to the pod.  It was the easiest transition ever.  We just put the pod on and took the pump off.  Because she was already on a pump there was no missed basal or that, just stopped one and started the other.  We learned how to bolus and set up the PDM.  And we left.
It was the first time in almost 3 years that she didn't have something attached around her waist.
And there it is on her back,hooked up and running. 


Next post- what do we think 4 weeks into Podding??  Stay tuned and follow my blog.....


I love reading all your comments so leave me your thoughts.