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Wednesday, September 4, 2013

What???

This happened the other day, seriously two different meter AND her CGM all with the same number!!  
My kinda wordless Wednesday post.....


Friday, August 30, 2013

Customer Service....

Oh Omnipod, you and good customer service are not words that belong together in a sentence, unless the word NOT is included.  I am a little bummed about this.  Why you ask?  I will share...

Prior to Omnipod Brianna was on Minimed pump and still uses their CGM and My Sentry.  Anytime of the day 24/7 and even holidays they would pick up quickly.  Sometimes- I mean usually,  within a few minutes.  Seriously.  Last time I was on the phone for 7 minutes TOTAL!!  Have we had issues with the pump?  Sure.  Have we had issues with the CGM?  Yup, but they always make sure they fix it.  I will say anytime we got an error I would call and demand a new pump.  Minimed would have me run tests on the pump to make sure it was okay.  If it passed the test they were okay with her continuing to use it.  But if I felt better they would send new.  NEXT DAY, BY NOON!  Did you hear that next day, obviously you had to call within a certain time to get next day but still most of the time you received a new pump (okay refurbished, but still.), the next day.  I think in the last 3.5 years I have asked for 4 new pumps.  Some probably didn't need to be replaced but I have to sleep at night and feel safe that the pump is not going to fail on her.  The last time we replaced it, two weeks ago, it was because she dropped it and cracked it.  OUR fault and they asked no questions, just agreed to send a new one.  They also let her change pump colors from purple to pink- you know pumps can be a fashion accessory right?!?  I received that pump with in 18 hours of my seven minute call. 

So welcome to Omnipod and their customer service or lack of.  I will go over the stats with them...  We have had one occlusion, 5 failed pods and SIX left stuck key detected.  Sigh, where do I begin with their hold time?  I think I have been on HOLD more with them then I have actually talked with people from Minimed, no joke.

Okay, of course in the middle of writing this Omnipod calls me from their billing department to try to work with me over insurance.  So I guess billing or claims department you rock, customer service, rant is continuing with you!

So back to the hold time.  I don't mind waiting, it can be expected I guess. But the other day I was on hold no lie, OVER an hour and a half OVER 90 MINUTES!!!   It got to the point I just wanted to keep waiting to see how long it would take for them to finally pick up!  There have been times that I am in a hurry and just want to report a failed pod and gave up.  Hey, I do have a life and am totally annoyed by their music.  The last time I called I talked with the representative about the hold time, she said they are overwhelmed with calls and are trying to keep up but just can't.  My thought is it might be time to add more people!  She did say the best time to call is the weekend and late at night.  That's fine and all but some issues need quick response time!


Not the text I wanted to get!

So back to all the issues.  I have called each time there was a stuck key, I was offered a new PDM the last two times I called, but turned it down as I didn't want to move all the information over and lose how it tracks all her data for averages and that.  Silly reasons, but I didn't want too.  BUT today's stuck key happened at school and she wasn't happy.  She said it wouldn't stop beeping in the classroom so went to the nurse.  The nurse called and I went there fix it and to call insulet.  I was only, on hold 8 minutes today.  Shocking!  I explained the situation and thought it would be a quick no problem we will send a new one, NOPE!  She wanted to know how many, what's happening to cause them and then said well maybe your daughter is holding the buttons too long at school.  HELLO!?!  They are happening to me too at home!  I was a little annoyed that she was thinking Brianna was causing this.  I reminded her she was in school and didn't like the attention the beeping PDM caused, so NO she was not doing anything wrong.  She then puts me on hold and talks with her supervision.  More questions, back on hold and finally says, we can replace it if you need us to.  Yes, that's why I called.  I want you to remember that with Omnipod the PDM is EVERYTHING, it is the meter and the way you bolus.  So if it dies you are basically out of luck!  So she says we can send a new one, is grounds that takes 7-10 days okay??  I said, no way.  This is interfering with her school and we need it to work properly, I can't be going to school to fix it.  She says fine how about Saturday? (today is Thursday)  I say fine.  Now do you remember MM and when they would send their products?  NEXT DAY!  I called about the same time so I know it is possible to get it here tomorrow, but Saturday works.

I don't regret switching her to Omnipod I just am disappointed in their customer service.  Pumping and supplies are not cheap, and kinda expect great customer service.  And yes, I probably should have taken a new PDM the first time it was offered, but thought and hoped it wouldn't be an issues.

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Wednesday, August 28, 2013

First few days of school....

After I finished the last post Brianna and I went to school for her open house.  We dropped off all her school supplies and all her diabetes supplies so everything would be ready for her on first day.  While we were there I wanted to make sure the school's network would allow her to text me as that is our plan this year.  Brianna is using an Ipod.  Well.... it didn't work. At all.  She would send a text and it would go 90% but never finish.  Okay, I really wasn't stressed about school starting but that was stressing me out!  It was Tuesday and school was starting on Thursday.  I talked with the assistant principal and he said he would look into it and fix it, or come up with a solution.  So Wednesday we went back to school to see what we could do.  Due to the school's super tight security or whatever, Imessaging would not work.  He was able to find an app that Brianna could download and could text me from.  Everything worked fine that day and I was back to being my optimistic self.

So Thursday morning, the first day of school, before breakfast she was a beautiful 108.  I was a little nervous about her possibly going low, so I didn't pre-bolus her at all. (We typically ALWAYS do.)  I waited until 8:50 made her a waffle with syrup and bolused as she ate.  I dropped her off around 9:15, school starts at 9:25 and hoped for the best.
At 10:15 I received this text...
She texts no words only pictures.  This picture shows me everything I need.  I can see what the sensor is doing, I can see her fingerstick number, and how much IOB. 
Uggg, 246 double arrows up!  But if you look her fingerstick was 224 and she still had 0.65 IOB (insulin on board.)  USUALLY I would have totally corrected that number.  But I let it ride out.  I wanted to see what would happen.  So I waited, if she was going to beep again it would have been in an hour, as that is how we have her CGM set up.  But no text.  Success!!  Now what would the lunch number be??





The nurse called at 12:25 right as she was going outside to recess she was 128.  That's is an iffy number in my mind.  The weather here is beautiful and I wanted to make sure that she could play and not have to worry about going low.  Recess is 30 minutes and remember she hasn't eaten anything since 8:50.  So I decided to play it safe and do one tablet, 4 carbs.  Well, 30 minutes later she came in and was 125.  So, she bolused as she was going to lunch.  Again no pre-bolusing means she will spike a little higher!  I'm trying to figure out setting and redo basal rates but for the first few weeks I just let things play out as I don't want to change too much.  I think she beeped again around 2:15 and was 226 on her CGM and 202 on a fingerstick, but she had like 2.65 iob so I let it ride again.  At 3:50 the nurse calls with her dismissal number and she was 148, slightly high but a GREAT first day!!

Don't really like the mountains at school, but we can work with it.



After three days of school now, texting is really working!  She loves that she is not leaving class.  Since we started this she only has left once, and that's because she left her bag in the nurse's office after lunch.  I really think it is helping her feel a little more independent.  For those that have asked Brianna is 9 years old and in the 4th grade.  This September she will have had Type 1 for 4 years.  I know this way of doing things isn't for everyone.  I have told Brianna several times that if she doesn't want to do it this way, or if it doesn't work out we can always go back to going to the nurse.  She DOES NOT want to do that!  I love that we are able to give her choices that make her feel like she's in control of her care. 

Brianna is going into the 4th grade and Courtney is 4 years old!! 

Kids and I first day of school. 


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Tuesday, August 20, 2013

Ready for School....

This Thursday Austin and Brianna go back to school.  Austin will be in 8th grade and Brianna in 4th.  Courtney starts in a few weeks, she will be in pre-K.  They are growing up and changing so much.  Somethings though will never change,like buying school supplies.  You know notebooks, folders, tissues, the usual stuff.  Notice I didn't say pencils, markers or crayons?  I guess the school got a great deal on some items and this year we didn't have to purchase those. (They included the price in our school fees.)  So Brianna's school supplies really just consisted of this...
All the school supplies she needs!


But we all know T1 requires it's own supplies.  For Brianna we keep a box of  diabetes supplies in the nurse's office.  It consists of most everything she could possibly need during the day.  The box sits on a table in the nurse's office right where she checks.  In the box we have batteries with a quarter taped to it (easiest way to get the Minimed Pump opened in a hurry), syringes- honestly I have no idea why I pack those we haven't used a syringe since she started pumping almost 3.5 years ago, sites for both MM and Omnipod (right now she is sticking with Omnipod but who knows when she will change- look for a post on that soon,) test strips for both meters she could use, alcohol wipes, tape, glucagon, tablets, lancets, insulin, and a ketone meter and test strips for it.  I think that's all.



All her supplies

Box, insulin for the fridge and Glucagon for the cabinet.


 Each teacher has a classroom bag they grab in case of an emergency- like when they go outside for a fire drill. This year Brianna has three different teachers.  I made a bag for each of them and for her special teacher's rooms, the art room and media room.  Right now we are bringing 6 different bags to distribute.  My thought is that I never want her to be without food in case of a lock down.  I put things that are higher in carb and could hold her over for a while.
Again this isn't exactly what our first choice for low foods would be, but I think it would work to keep her numbers up for a while if necessary.  They are also foods that I don't have to worry about being crushed, broken or really expiring.  This is why we don't have goldfish or pretzels or things like that in the bags. Each bag contains a total of 89 carbs- if she ate it all.  I included in each bag a list of how many carbs each item has.


Below is a picture of snacks and drinks we keep in the nurse's office just in case.  These are more if something happens to her lunch or if they have a snack she doesn't want or if she just needs something.





Yesterday we met with the nurse and Brianna's three teachers to go over what the plan is for Brianna.  First let me say her school and nurse are AWESOME!  They work with me and accommodate Brianna whenever it is necessary.  Brianna is on an IEP so we just add her diabetes needs into that.  For her we put that she has unlimited access the bathroom, water and the nurse.  Really we don't have a big formal document.  It also includes how tests are to be handled regarding diabetes (like classroom tests and state tests.)

This year we are doing things slightly different, but keeping some the same.  For us this works- the school, nurse, endo and our family.  What we do might not be okay with/ or for everyone.  We are keeping it the same that when Brianna arrives at school she swings by the nurse and tells her what number is on her sensor. Usually the number is going up as she just ate breakfast, but it gives the nurse a feel for how Brianna is starting the day.  The next planned trip will be before recess she will do a fingerstick at that time.  She will come back in after recess and usually check again and carb for lunch.  She then comes at the end of the day for the last fingerstick before dismissal.  Those are her planned trips to the nurse-4 times.  Here is the part we are changing-  last year each time her CGM would alarm it meant a trip to the nurse.  Some days that could be a TON.  As much as I love the low predictor alarms they can be overkill sometimes.  Why do I say that?  Well, it predicts a low, then beeps low when she hits it, then will predict low and this time she is on her way up.  We have her settings on the CGM that she beeps every 20 minutes when low and every hour when high.   So for one low she could beep 3-4 times.  That's a LOT of trips to the nurse and sometimes they were not necessary.  So this year Brianna will be carrying her Ipod with her.   It gets WiFi and she will check IN THE CLASSROOM, and text me a picture of her PDM and CGM, that will give me enough information to help her decide how much to treat or correct.  Thus reducing the trips to the nurse and time away from class.  When we talked with each teacher yesterday we went over where she will check  Each classroom has a sink so she will check back there by it.  Then return to her seat.  I am SO hoping this works.  I hate for her to miss class time.  So for all these checks the nurse is not being notified.  If she feels low or if she is under 60-70 or above 300 she has to go to the nurse so I can talk with the nurse to decide what is going on.  The nurse also will ALWAYS be accessible to Brianna and I can call the nurse with any concerns I have and she will get Brianna.  My goal is that this will help Brianna feel like she has more control over her care.  Is this a lot for a fourth grader?  Maybe but I really think she can handle it and this is what she wants.  So fingers crossed this works and goes smoothly.  Will keep you posted!  I also like this because she will always have all her supplies with her and wait until you see her bag. 


Well, that is about all I have for right now.  I'm off to finish packing those supply bags and getting her stuff ready for open house this afternoon.  I have lots more posts started that I need to finish like, pumping at the beach, cheer leading, her ENDO appt, and her new diabetes bag (which is totally aweseome.) 


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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.....


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