CGM in the Cloud: We Are Not Waiting

I shared yesterday a sneak peak of Angelina’s dexcom trend line in the cloud.  I’ve been asked by a few people/friends how the setup went?  How long did it take?  Was it hard?  Do you think I could do it?

I am here to answer your questions!

We got back from vacation in Florida on July 8.  One of my local d-mom friends had posted in our local group about how her husband had spent the weekend setting up CGM in the Cloud for their son and how happy she was with it and proudly displayed a photo of her wearing the pebble watch with CGM trend on the face.  I had heard about the cgm in the cloud project and had previously joined, then left, the Facebook group when I realized it required having a data connected android phone.  The reason for this being a “no” for us is: money.  Pure and simple.  However, said friend says “We got the Boost Moto G at target, $99 and hooked up with Ting for $9/month”.  Say what?  Still a little out of my price range, but I was chomping at the bit to have this for Angelina so I rejoined the CGM in the Cloud Facebook group.  Meanwhile, another friend from the local group posted about how they are getting a new Dexcom system to replace their currently out of warranty and not covered by insurance one and she is going to hook up to the cloud.  This sparked input from several of her friends who mentioned various sales and coupons/discounts.  Specifically Target had Boost Moto G on sale for $59.99, plus 2 day only(!) Target cartwheel app has 15% off any electronics purchase, ending the day I am reading this thread (Monday).

Angelina happened to have a dr’s appointment just around the corner from Target, so I decide… let’s go see.  I stand in the pre-paid phone aisle at Target staring at all the different phones.  They are out of the Moto G phones (*cry*), and besides it does not show it marked down to $59.99.  Regular price only, $99.99, out of my price range.  So, I look at the other two options: Kyocera Hydro Edge for $49.99 or Kyocera Hydro for $29.99.  I do not know for sure that either of these phones are OTG capable, which is a requirement to be able to use the phone as an uploader device for the dexcom.  I inquire about return policies and am told I have 30 days to return any product, with receipt, regardless if it is open or still sealed.  I decide I will buy cheapest option and keep fingers crossed that it is OTG capable. Why spend more money when I can possibly pay $20 less?  Total cost after cartwheel: $27.40.  Totally do-able.

I then have to decide: Do I want to wait to order cable from Amazon?  Cheapest option may take 2 weeks (or more) since it is coming directly from China.  I have not had good experiences ordering very cheap cables directly from China.  Wait 2-4 weeks for delivery only to discover cable does not work or is faulty.  Get refund, repeat process.  Nope.  So, I head to Radio Shack thinking they will have cable.  Walk in, ask for OTG cable.  Very nice salesman says “Sorry, we do not carry those.  But… I had a buddy who was looking for one last week and he called around and the only place who has them locally is Fry’s Electronics.”  YES!  Fry’s is (sorta) on the way home.  Bonus: they have 20 in stock and they are $5.99 which is $4 less than the not-from-China options on Amazon that were available for Amazon Prime 2-day shipping.

Go home with my loot, all the while explaining to David that total set up is in lieu of upgrading to newest expansion of World of Warcraft that he did recently and I was contemplating.  CGM in the Cloud is currently more exciting/fun for me than WoW.  He does not understand, thinks I am crazy, thinks this is unnecessary. He is not the one who obsesses over Angelina’s blood sugar readings, or is constantly fighting with her to get a peek at her Dexcom.  Or feeling like diabetes is the center of the universe when I have to ask her what her BG is when she walks in the door from playing at the park, or school, etc.  That is a whole other discussion, but the fact of the matter is that “What’s your BG?” is often about question number three when she walks in after being away from me, but it is asked far too often and far too often creates tension between us.  I don’t want to ask her about her BG 2785 times a day but she’s 10 years old and doesn’t pay attention to her BG a lot of the time, until it becomes urgent/emergent instead of heading off high or low trends before they get to that point.  Now I can obsess over BG numbers without disturbing her.  When school starts next month, I can look at her trend line at any point during the day and not have to obsess and wonder what is going on.  I can go to the store and not have to worry about getting a phone call that she’s low in the middle of shopping for broccoli, because I will be able to look at her trend and say “Maybe now is not the best time for me to be so far away from her school.”  I will also be able to see what her BG is at the end of the day when she is walking home from school and know whether or not I need to go outside to watch her walk home (Her new middle school is half a block down from our house!) and/or go over there to meet her and walk her home.

More immediately I can let her go to the park across the street and not wonder if she’s checking her Dexcom periodically to avoid going low.  And I don’t have to call her to ask her what her BG is, because I will be able to see it.  And I can call her and tell her she needs to eat a snack, instead of just blindly saying “Come home NOW, because I don’t know what’s going on.”

But I digress.  In the end David sighed at me, said it wasn’t about the cost of things (“By the way, how much did you spend?”) more just that he feels it’s unnecessary and will potentially cause problems with school, because look at what we went through last year with less tech-y tech options.  (You can read back through some of my posts for more background on that struggle with her elementary school.)  So I set to work following the DIY quick-start guide for the cgm in the cloud called Nightscout.  I will tell you that I am so-so at tech-y stuff.  I am better at figuring out software stuff, not so good at development, coding, back-end stuff.  Of course, setting up CGM in the Cloud requires a little bit of both, although less than it had originally seemed when I first read through the instructions.  It all made a lot more sense when I was actually doing the things step by step as I set up our system, rather than just reading the directions and trying to figure out what it meant inside my head.  It still took a while.

I did run into a few snafus, which were helped by using the wonderful search function on the CGM in the Cloud Facebook group.  Every single one of my issues had been experienced by at least one other person who had done this before me, and all helped to resolve my own issues.  Some of the things I figured out on my own with the help of the almighty Google.

I finally got everything set up on my computer and come to the moment of truth when you finally connect your android uploader device to the computer to install the app that you’ve just made and not realized you were making.  “USB device not found”  WHAT!?!?!  This took me a long time to troubleshoot.  Finally got it resolved, got the app on the phone, plugged in the Dexcom receiver and… nothing.  Just nothing.  It did nothing.  Turns out the $29.99 Kyocera Hydro was not OTG capable.  Had I searched the CGM in the Cloud group prior to starting this whole process I would have quickly discovered that I could easily determine if the phone was OTG capable by the fact that when the Dexcom is plugged into it, the Dexcom would start charging.  It didn’t.  So, after about 5 hours of working on this project at that point, I headed back to Target at 9pm on Monday night.  Only this time I went to a different Target because I knew I needed the Moto G.  Fortunately our local Target had ONE Moto G in stock and let me exchange the Hydro. Then I got ice cream for my family, per David’s request.

I headed home, knowing that I was so close to being done.  Fortunately, since I had already done all the hard techy stuff on my PC I pretty much just had to install the Motorola Device Manager/drivers onto the PC and plug the phone in and load the app onto the phone.  OR so I thought.  I finally entered all the data streams into the app and waited.  It should be working. But it wasn’t.  The phone was getting the Dexcom readings and showing them on screen (awesome in itself) but it wasn’t uploading them to the database in the cloud.  Why not?  I couldn’t figure it out.  I search the Facebook group for answers.  I typed and retyped the path.  Finally, 2 readings!  Then on to the fun task of figuring out Microsoft Azure.

Azure gave me some problems too because I really did not understand ANY of it.  I didn’t even really understand what any of it meant, I just followed the directions.  Configuration strings? Huh?  What the HECK is a deployment?  Am I supposed to do something with this fork? (And not the eating utensil)  Is there a magical hamster somewhere in here that is configuring this data to my site specifically?  How does that work?  Shouldn’t this data be showing up on her website by now?  No.  It wasn’t.  It should have been, but it wasn’t.  I found some magical thread that said to add a /command on the end of the web address and it’s supposed to show you some data thing (which I really had no idea how to decipher), and if it shows this, it means it’s working.  But if it shows this, it’s not working.  Well, it showed the data that said it was getting the readings from the cloud database, but still all I am getting on the website is several grey – – -.  At this point it’s midnight, David is in bed asleep and I had been working on this (mostly) since 4pm.  I say mostly because I did take a break to eat dinner, plus my last minute trip to Target and to get ice cream.  I was tired, nothing was making sense and I hoped that everything would fall into place in the morning.

Fortunately, in the morning everything fell into place.  One single thing was typed wrong and trying to pull data from a different collection than the phone was sending it to.  I fixed that, but still no data on the website.  So, I decided to “sync” deployment.  Please, magic hamster, help me!  And then… IMG_0069

Voila!  All my hard work paid off.  Total time: approx. 7 hours.  Monies paid: $70.66 (moto g phone, OTG cable, $9 wallet/case.)  We are currently running the uploader device on wifi only.  We also have personal hotspot capabilities on all of our iPhones (including Angelina’s) that should allow her to connect the uploader to her data plan connection for no additional cost.   Value: Priceless

 

Vacation and the TSA

If you read my blog because we belong to some of the same T1 groups then you have probably seen me posting about flying for the first time since Ang’s T1 diagnosis last year.  Or, my paranoia about being strip searched by the TSA for putting juice boxes in our carry on bags.  I am here to tell you that it was all for naught!

I have been so stressed out about what to pack for our trip as far as diabetes supplies and worried about “Is this going to get us in trouble?”  “Is this going to have to be thrown away at the security checkpoint?”  I now have the answers to those questions!  NO!  Just no!

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The insides of the medical suitcase. Lots of pokey things and liquids, gels and aerosols, OH MY!

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Elmo tried to make me lose my s**t!

We left Los Angeles Monday evening after a quick curbside good-bye as my husband dropped Angelina and I off at the airport.  I was a little disappointed because apparently the terminal we were dropped at didn’t have a skycap so I had to attempt to maneuver our giant suitcase (which I miraculously managed to get to weigh just under the 50 lb limit.  It weighed in at 48.6) while also carrying a giant purse, a giant backpack full of electronics, a carry on suitcase full of medical supplies, and corral Angelina!  We waited in line at the airline desk for what seemed like forever, but finally we were on our way to security.

I made a point to tell every TSA worker that we came in contact with that my daughter had T1D and that I was carrying medical supplies.  Of course, I didn’t need to and I kept being told “Tell them at the front”.  We finally made it through the (very narrow and anxiety inducing) line up to the conveyor belt.  Fortunately we got cleared into the TSA pre-check line which means I didn’t need to take anything out of any of our bags and we both got to keep our shoes on!  I told the gentleman that my daughter was T1 and that this suitcase was filled with medical supplies, including liquids.  He talked to the person running the scanner and let him know then directed us to the line for the metal detector.  I will stop here for a minute.

This was a big source of my anxiety.  We fly out of LAX and I sort of figured that if any airport had the AIT (imaging) machines, that it would be there.  TSA rules say that if you refuse the AIT you have to get a patdown.  You can’t choose the metal detector if you are supposed to go through the AIT unless you are physically incapable of standing with your arms above your head for the 7 seconds it takes them to scan you.  So, I had given Angelina an early heads up that she might have to get a pat down.  LAX does have the AIT machines, but apparently they only do them for some people and most people still just go through the metal detectors.  Woo! Was I happy to see that we didn’t have to go through the AIT.  However, when we got up to the metal detector Angelina was in front of me and the guy stops her and says “What’s that under your shirt?”  So she lifts up her shirt and starts explaining about how she has diabetes and it’s a machine for her insulin, yada yada yada. Angelina tends to be long-winded (wonder where she gets it from? *wink*) so I was just like, it’s an insulin pump and braced myself.  The guy says, okay, go on through and then stand right here and points to a spot to the side after the metal detector.

She walks through, no beeps.  I walk through, no beeps.  We stand to the side for a minute and a lady comes with a little piece of padded cloth, swipes it over Ang’s hand and sticks it in the machine then says we can go.  We walk over to the conveyor belt, grab our stuff and we are on our way.  No questions, no bag inspection, nothing.   All of my worrying was for nothing.  The whole experience was actually LESS stressful and intrusive than the last 3 or 4 times that we have flown since I didn’t have to separate out my bag of liquids and take off my shoes, etc.

The hardest part of the whole experience for me was waiting in the chute.  I am a big girl, and I am also prone to claustrophobia, so to be stuck in a partitioned line that is just wide enough to accommodate our rolling carryon suitcase, while wearing a big backpack, a big purse and said suitcase and trying to keep Angelina from knocking into things/people with her backpack was very uncomfortable.  But, we made it!

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Mood lighting to encourage sleep. Unless you’re traveling with a spastic 10 y/o who’s watching Disney on maximum brightness and insists on talking to you.

The flight is a different story.  Overnight flight with a very excited 10 y/o makes for a very exhausted mom who got zero sleep in over 24 hours.  Add in a 3 hour time loss and I am just very glad that I know what to expect for our return flight.  It should be easier.  David will be with us to help and it’s a daytime flight where we gain time instead of lose it.

 

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Pit stop for breakfast on the way from the airport. Nevermind it was technically 4am for us.

 

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Where Angelina was 15 minutes after arriving at our destination.

 

 

 

 

 

We Made It!

Back from science school.

Fun was had by all and diabetes was relatively well behaved.  Had a rough day the first day, highs all day then low at night with lots of free carbs to keep her above 70.  But, overall a very good experience and a good lesson in more independence for Angelina as she choose not to have me accompany her on many of the activities (I was just there for her medical needs, which means I got a lot of down time since she didn’t want me tagging along most of the time).

Home now and continuing to pack for our next adventure – FLORIDA!  We depart on Monday night.  There ain’t no rest for the wicked.

 

Bonus: At science school for one of the games/lessons they did they got rewarded with points that equaled one piece of a costume per point and the kids got to dress the adults up in funny costumes.  See if you can find me.  (hint: t-shirt is a dead giveaway)

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Let Summer Commence!

Tomorrow is Angelina’s last day of school, technically.  The last day is really the 19th, but on Monday she and I will be heading off to outdoor science school with 94 other 5th grade students, teachers and chaperones.  I am NOT chaperoning for anyone except Angelina.  I am attending as her personal nurse, lol.

After those lovely* four days we will be home for four days before catching a red-eye Monday night headed East to visit family in Florida for two weeks.  David will be joining us halfway through that time since he doesn’t have the extra time off work and I am not sure what Angelina’s blood sugars are going to do with travelling, a 3 hour time change and the Florida heat and humidity.  The first week (or at least the first few days) we are in Florida will be a test to see how Angelina’s levels adjust to make sure that she is going to be relatively stable before David gets there so the week he is there we can actually ENJOY vacation and hopefully not be stressed out about what her levels are doing.

Of course, I’m a stresser, a worrier.  I have been stressing about how this trip is going to go for the past two months.  I planned on us travelling there separately specifically for the purpose of being able to deal with Angelina’s likely blood sugar issues beforehand.  I am NOT looking forward to travelling alone with her for the first time since her diagnosis last year.  I didn’t ever particularly care for travelling alone with her, even before diabetes.  But, the stress of not being able to predict her blood sugar on vacation beat out the stress of flying cross country without David while trying to keep track of an ADHD 10 y/o with T1 and all the LUGGAGE that entails.  I have been packing her medical supplies suitcase since the beginning of May.  We didn’t even have our plane tickets in the beginning of May.

I’m a nutcase.  Straight up neurotic.  Please tell me it will all work out.

 

Bonus:  Three weeks after we get back from Florida Angelina will be going to Diabetes Camp for a week and I will get a much needed diabetes break.  Who am I kidding?  I’m going to stress the whole time she’s gone and wonder what her BG is doing and whether she’s behaving and listening to the counselors.  Whether she’s making friends or alienating everyone.  And, lastly, whether she’ll want to go back next year.  Because I want her to go back next year, while I also want her to hate it because her being away and me not knowing what’s going on is more stressful than her being here and me being able to handle it.  Ok, I admit, I’m a total control freak.

Which Came First? The Meltdown or the Low?

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As you can see from this (rather large) photo… blood sugar levels were floating along nicely at a pretty steady 115ish for a few hours after her very low carb dinner because she decided she only wanted chicken and sauce and not the side of rice.  Okay, fine, whatever, no big deal.   Dinner was a little later than usual this evening because I didn’t got the slow cooker started until later than I should have and so what, it happens.

We were watching the 3rd episode of Sherlock season 3 on Netflix and OMG it’s 8:45pm and you didn’t do your homework yet and you still need to take a shower before bed.  Of course, like every time I tell her she needs to do homework or shower (or both) there’s lots of whining and complaining and “I’ll do it super quick 5 minutes before I’m supposed to be asleep.  Please let me play on the computer for the next 40 minutes until then.”  To which the answer was a very firm “Not on your life.  If you can really do all that in 5 minutes then do it now and then you can have until bedtime to play.”  Makes sense, right?

Well, she did do her homework and it really did take her about 5 minutes.  But then it was time for the shower and instead she’s picking at scabs on the back of her heels.  I may not have mentioned this before but she has pretty bad eczema and one of her “quirks” is that she scratches herself bloody on a fairly regular basis despite our best efforts to keep things under wraps.  Well, she had some scratches already and she apparently decided that picking at scabs and scratching was a better use of her time than, oh, getting in the shower so she could actually do what she really wanted to do (computer time) before bed.  Around 9:10 I finally coerced her to stop picking and get in the bathroom for her shower.  Five minutes pass, no sound of the shower.  Ten minutes pass, still no sound of the shower.  At this point I announce that it’s 9:20 and she better be getting in the shower because it’s 10 minutes until bedtime.  At which point she promptly starts crying and sniffling in the bathroom.  She doesn’t want to get in of course, because all that freshly raw skin is going to burn under the water stream.

We’ve recently started recording her various “meltdowns” at the direction of her behavioral therapist so when the crying hadn’t subsided in 10 minutes I decided to start recording and go in to see what could possibly be the matter.  Of course she won’t talk to me, won’t get in the shower, won’t look at me, etc.  Just crocodile tears and lots of sniffles.  Any suggestion on my part that she now, finally, get in the shower is met with a sound that is similar to a cat that’s been backed into a corner and isn’t quite hissing, but has that deep rumbling sound they make that says “I WILL scratch you!”

After about 10 minutes I manage to get her into the shower and get her hair washed, her crying and being generally uncooperative the whole time.  I finally leave the bathroom with 21 minutes of this weird crying, sniffling, growling audio recording.  At this point her pump has also been off for almost an hour.  I think maybe her blood sugar is going to be heading upwards since no basal insulin and am shocked to see that instead she is 72 with a sideways down arrow.  I manage to check her with the meter (she, at this point, is laying in the bathtub with the water off but not getting out) and it also says 72.

And then I realize… She started dropping at 9:15.  The same time that she finally headed into the bathroom to start this entire process.

So… which came first?  The chicken or the egg?  Was this drawn out emotional meltdown the result of a blood sugar drop?  Or was she really that distraught over the prospect of showering that her blood sugar ended up dropping low?

Just one of those stupid, stupid things that we deal with living with a child with Type 1 and other emotional/behavioral issues.  It’s often hard to tell what caused what…