Our CGM in the Cloud Experience: #wearenotwaiting

Thursday, August 14, 2014

So I drank the Kool-Aid.

You knew I would.  When have I ever NOT jumped into new technology with both feet?!?

I can't help it!  I love gadgets.  I love trying out new things. 

Soooo.... I recently set us up with the Nightscout/CGM in the Cloud.

I'll admit... at first I didn't think we needed it.

And we honestly, we don't.  NEED it.  A's Dexcom receiver can sit on our bedside table and pick her up in her room at night.  It will pick her up anywhere in our house.  She doesn't go on lots of playdates or (ever) with a sitter other than my parents (who text us her numbers and questions all the time anyway).  We are blessed with a great school nurse who takes wonderful care of her at school. 

Jason didn't think we needed it, either.  But I WANTED it.  Just because I wanted to try it out.  And for the times - few and far between (I THOUGHT) that we would use it.  So we discussed....

And then we went to church.  Sweets has always been nervous about church... about them not knowing what to do for her or calling us when she needs us.  Long story short (I'll write more later - Promise!)... Her Dexcom beeped low.  She told her teacher.  She told MANY teachers.  They all ignored her.  And when I picked her up, she was 49 and VERY upset.

That was all it took.

I went out and bought what I needed to set up the system. 

If you want to find out more about HOW this works and exactly WHAT you need... click here for info and search for the CGM in the Cloud group on Facebook.  Those folks are wonderful!  They are full of information and advice.  24/7.  (Seriously, I asked a question the other night close to 1am and got a ton of answers and advice!)  I'm no expert... FAR from it  So go to them for all your serious inquiries!

But, just in case you don't know what I'm talking about (that happens to me a lot!), here's the deal. 

Some very smart people created this system where you can hook up your Dexcom (only Dexcom right now) CGM to an Android phone.  And it will... somehow that I don't totally understand because I'm not that techy... send the info from the Dexcom to a website that you can access from anywhere.  ANYWHERE. 

Let's just pause for a second here. 

You can see your child's (or spouse or friend or whoever's) CGM graph from ANYWHERE IN THE WORLD.  As long as you have Internet access.  So your person can be across the planet and you can still know if she's low. 

BAM! WHAT?!?

And get this... you can get a Pebble watch... and it will put their info ON YOUR WRIST.  All day... Just glance down and get real time blood sugar. 

MIND.  BLOWN.



This is our experience so far....

I.  LOVE.  THIS.

How did we not do this sooner?  This has been amazing in so many ways that I never could have expected or imagined before we started! 

This is what our system looks like...



That is our Dexcom hooked up to a Moto G phone.  I got the phone at Target for $59.  I got the cables on Amazon for about $15 for both.  We were not going to do a phone plan, but I couldn't connect to our home wifi so I went with Ting which is supposedly the cheapest way to go.  We're thinking around $10-$20 a month depending on if I can get wifi working or not!

There is lots of talk about the port on the Dexcom being fragile and the need to keep it secured and in a case that will protect it. 

I can't say that ours seems too fragile... BUT... I'm using the old Dexcom for the "rig" that I accidentally put in the washing machine.  We were out of warranty so we were able to get a new one (Thank Goodness!  That was the last time I was allowed to wash anything... so it kind of worked out nicely for me!)  Honestly, I would have been a lot more nervous about it if we didn't have our "regular" Dexcom as well.  Also, because this is not our "regular" Dex, I have yet to unhook that purple cord you see on Dex.  I think the constant plugging and unplugging can cause issues.  So it's nice to be able to leave it plugged in all the time.  (The Dex gets charged from the phone so charging the Dex itself is not necessary.)

This is how we carry it around...

The first thing I did was put it in A's DS case.  That worked well.  It's nice because it's hard.  But it's kind of big and bulky.  For right now - when I am still the one with the "rig" in my purse most of the time, I wanted something smaller. 

This was our first attempt...

I got this wallet at Target for about $14.  It fits in there snugly and it's smaller than the DS case.  It's leather and I liked the wrist strap.  A liked the purple and the butterfly!  I also like the compartments for each piece inside.  Some people use a smaller cable than the purple one we have - and that can help not take up as much room.  This worked really well for us.  I didn't feel like it was too delicate!

But what I REALLY wanted was a Vera Bradley case.  Because... I just like Vera.  I found one that had a shoulder strap but the cables would be outside and I didn't like that. 

Then I went to a Vera outlet (holy cow) and found this wallet!


It's a little bigger than the purple one in length but smaller in width.  The pieces are not held as tightly... which could make it more fragile... but also keeps it from overheating.  Not that overheating has been an issue but it can get a little warm.   I don't feel like it's fragile.  I also like the wrist strap.  And it matches A's bookbag.  Bonus.

Of course, there are a ton of options here and it's all personal preference.  There are some cool looking hard cases out there!

We thought we might use it off and on...

HAHAHAHA

We have used it non stop since I hooked it up. 

Even when she's in the same room or house, it's nice to just look at the phone or the computer and see her number instead of pushing the buttons on Dex.  (That seems lazy... but it's true!)

Here's what it looks like on my phone...


See that blue line?  That's what is predicted... How cool is that?  We have found it to be quite accurate.  

 Of course, it didn't take but a day before I decided I needed the watch!  So I bought a Pebble!


With just a glance at my wrist, I can see what is going on!  

I thought it might be too much information... but I haven't found it to be that way.  It's nice to look and see... Right now as I'm writing this, Sweets is asleep upstairs and I am keeping track with just a glance at my watch.  As with anything, it's only too much if you let it be. 

The other nice thing about the Pebble is that it will not just alert you to highs and lows but also alert you if it's not getting data for some reason.  Or she's out of range.  And it seems like that happens faster than normal with the regular system.  And let me tell you... when it alerts to a below 55 low - the thing goes insane.  No way you'd miss that.  It about vibrates the rings off my fingers!

Here's some other ways it's come in handy...

We took a little road trip and it was nice to be able to either look at my wrist or at the phone to see what her bg was doing.  Especially because we had upped the basal to fight the inactivity of the car and we wanted to make sure we didn't over do it.  


Today we went horseback riding.  We were going to be out on the trails for an hour.  She's been going low... and breakfast insulin would be peaking... Here's what we did.  We had her wear her "regular" Dexie in her pouch with a few tabs - just in case.  I wore the "rig".  And monitored her the entire time just by looking at my watch.  Amazeballs.


This is me wearing the "rig".  It's all in the Vera case.  I undid the wrist strap and put it through my belt loops and then attached it to the ring on the other side.  It hung nicely at my side - working and keeping her safe throughout the ride! 

Sweets is NOT wanting to go back to church.  She's always been nervous that exactly what happened would happen.  That she would be low and no one would listen.  BUT... because she knows that we will be watching her bg the entire time... she feels safe enough to go back. 

I know that we feel a lot more comfortable with her going to playdates and parties on her own because we can watch.  I don't have to sit in the room during dance or cheer practice.  She is able to have a lot more freedom and we can still make sure that safe. 

We were not going to send it to school originally... but now we are planning on it.  For us, our plan is to have her keep the "rig" in her bookbag all day.  It won't pick her up when she's at lunch or recess or specials.  But that's ok with us.  Like I said, we have been blessed with a great nurse.  We plan on giving her the website so she can see A's bg.  I can see this coming in handy if she's been low or high and she wants to make sure she's responding properly without having to call her out of class.  I can also see this being useful during testing.  And I'm sure that it will be useful at other times that I haven't even thought of yet! 

Of course, the possibilities are endless!  This could be amazing for a situation where there is no nurse... or the person in charge is not doing their job very well.  This could help aid kids to do their own management with the safety net of someone else watching, too.  It can make wearing a cgm a little more discreet. Because you can get texts on the Pebble, it could allow parents to text what to do to their child's wrist.  Seriously... endless possibilities and situations where this would be useful!

This technology is amazing.  Even J, who was very skeptical, thinks that it's definitely been worth doing.

We just feel... safer.  More in control. 

Two things that are priceless when dealing with type 1 diabetes.

We both highly recommend it! 

And we aren't the only ones!  Go on over to Houston, We Have a Problem and check out Laura's vlog about her Nightscout system!  

To read my update on our cloud experience click here!

2 comments:

  1. so i didnt know it predicts... i think i learn something new about it every day. BTW... I would totally be on board with the Vera wallet too. Think Justin would carry it?

    ReplyDelete
  2. We just got the Dexcom cgm last week. So far, what a Godsend except my bedroom is too far from my daughter's room to pick up the signal. So still exploring ideas so this is great.

    ReplyDelete

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