Wednesday, January 18, 2012

mySentry: My diary of the first 3 days.

You're in the right place!  My blog is under construction.  Please bear with me!

I have so much to share and only so much brain capacity. I've been sitting here staring at the screen for five minutes and have decided to just begin typing and see where it takes me.

I want to start out saying that I fully understand how completely blessed I am to have the mySentry sitting on my bedside table at this very minute. It is the beginning of something wonderful, and I have this unshakable feeling that this is bigger than what it seems to be.

On the outside it seems so simple. A monitor that displays your child's CGM graphs, directional arrows, BG number, Reservoir units, battery life and more. But on the inside, you is peace of mind, and that is such an overwhelming feeling I can't wrap my head around it.

(If you are not sure WHAT the mySentry is, please check out my post about it HERE:  And all the links attached to it!)

This is one of the pictures that was released with the the mySentry:

Yeah...I didn't look like that. Most of you know that last week I was on my deathbed with the flu of the century. Included in the perfect storm of an ear infection and a sinus infection...I also had pink eye. The word "mess" doesn't even seem to cover it. So I was in my sweats, with bright red eyes, and a headache the size of Mt. Everest the first two nights I worked with the mySentry. Needless to say, my experiences were under "real life" circumstances, not nighttime perfect hair, cute nightgown, lab conditions.

Below is my thought process throughout the weekend.

Day 1: This UPS guy probably thinks I'm a junky. Bright red eyes, not a stitch of makeup, and obviously full of some kind of medication...but yet I smiled and I smiled wide. It has arrived! IT. HAS. ARRIVED!

Wait. I need to slap a CGM on someone. Who? Who will be my lab rat? Ahhh! B! He is my most mellow...AND he had the highest A1C last week...brilliant!

After inserting the CGM, which B took like a champ, my husband and I set to our room to set up the mySentry and to synch the pump and the outpost. I checked the clock to time us...we were expecting a good half took 8 minutes from opening the box to having it ready to go. Winning!

As I laid on the bed: I'm never going to sleep again. I'm just going to stare at this pretty graph all night...I just know it. (Snore.)

Now before I go on, you should know that I didn't read the instruction booklet before we went to bed. I was sick and my eyes hurt. This was a mistake. The alarm went off ALL NIGHT LONG. I was beside myself with confusion. I would silence it and it would just go off again and again. Later I found out that you can mute the alarm by pressing the silence button TWICE. I did not know that, obviously. There was one High BG alarm that I got up and fixed and then there were a couple where it couldn't find the pump. I'm chalking night one up to a rookie mistake. Do over!

Onto Day 2:

It was the weekend, so I spent much of my day walking by my bedroom door to look at the graph. Hello, awesomesauce! I know when we used the CGM in the past the boys would be beyond annoyed with me when I would ask them to take out their pump so I could see the graph and the number. This device sets them free of that...when we are at home anyway. That night when we went to bed, I was ready. I let the lights on the graph lullaby my eyes to sleep and night 2 began.

12:00am ALARM. High BG. B has been sick and his BG was over 250. This is the first big victory. I had bolused him an hour and a half before. I wouldn't have known for a couple hours that he was going up, (rather than down,) if it weren't for that alarm. I went in and bolused him and things were quiet until 12:30.

12:30am ALARM. It is alarming that it can't find a signal. I'll just quiet it with the silence button. A few minutes later...ALARM. I will quiet it again. A few minutes later...ALARM! At this point I have two choices. I can go in there and flip B over so there is a signal again, or I can MUTE the alarm altogether until the 2am check. I choose MUTE. (I was dying, remember!)

I got up at 2am and did my rounds, where I was forced to bolus B again. I was so thankful I had an eye on the graph, I hate bolusing before the first bolus has run its course. I turned the alarm sound back on and the rest of the night was quiet. I woke up periodically on the hour because of my head cold, and in a blurry haze smiled at the CGM graph in front of me. Flat line...all was well.

DAY 3.

11:45pm. Low alarm. Tears. Feed B. This thing is magic. It would have been another TWO hours before I checked him.

3:00am Alarm that I need to calibrate the CGM. "Thanks for the reminder" >Quiet! It keeps alarming. Apparently this is non negotiable. I always calibrate at 2:00am check, but this time forgot. My mistake. I jump up and check again and calibrate and there are no other alarms the rest of the night.

This is what I woke up to the next morning:

Is it not beautiful?

Tomorrow I will post my thoughts and post answers to the questions that many of you have, incuding:

"Will I ever be able to afford this?"

"You have three boys, how is this ONE gadget, that works with only ONE child at a time, going to help you?"

"And, how do you really feel about it?"

If you have any other questions, please feel free to leave them in the comments section and I will try my very hardest to answer those too!


  1. Ok, if you get two messages from me its because the 1st one I published isn't coming up!
    I have Type 1 and am an adult... I worry all the time that this will happen to my son, too. I have hope after reading your post that perhaps help really is on the way! Thanks- and please keep us updated.

  2. Damn DexCom. I want one! So glad you got to have a go at this.

  3. What awesomeness!!!!!!!!!!!! You so deserve the opportunity to try this out Meri!

  4. Meri - thanks so much for taking the time to share some real life experience with this. You rock!

  5. Just the thought that the alarm actually wakes you is enough to make my heart jump! That is currently my biggest frustration, not being able to hear Ally's alarm at night. Thank you so much for sharing your experience with us.

    Question: So, during the day you said you looked at the graph. I am constantly asking Ally what her pump says (and she gets annoyed!). Does it work only if they are in the same room as the outpost?

  6. Could you please share with us where your boys keep their sensor on them while at school/sports/etc.? We have a six year old using a DexCom, but find it tough to find comfortable/secure ways for him to wear the sensor. Thank you so, so, so much!

  7. I AM LOVING THIS! We started pumping in October and we watched the video you published during the pump carnival several months ago. We chose Medtronic and a huge part of it was that my 8 year old saw your boys using it all by themselves. Independence is a big deal to her.

    Anyway...we are getting the hang of puming, and now I've started setting my sights on the CGM. And I'm saving my pennies for the Sentry...

    You said before you could start using it you had to insert a CGM into one of they not always wear one? Were you just taking a break from all the mechanical parts? Was it the drugs talking? Just curious...

    I'm a loyal reader, but a less frequent commenter. Just wanted you to know, you're a diahero :)

  8. And...when did your blog header change? Cuz...I love it!

  9. again, i am so happy you have the opportunity to use one of these! i look forward to hearing more about it.

    not gonna lie, i want one for myself. i don't always hear the pump alarming in the middle of the night.

  10. WAHOO!!!!!

    How far away from the mySentry unit can the person be. Does this make sense? So...if, say, he was all hooked up, but went out front to play, would you still be able to keep tabs from inside the house?

    Like.........and I know it's a long shot, but............could he go to SCHOOL? I'm thinking probably not, but it would be nice, no?

  11. thank you so much for sharing your experience with this!! it sounds SO AMAZING! I haven't really heard much about it yet, but I plan on googling my little heart out to find out more. :o) In the meantime, I wanted to ask is it strictly for Medtronic? thank you again!!

  12. Totally LOVING the new look!
    Pretty dang jealous about the amazing technology you get to play with, but am so excited to read all about it!!

  13. Hi Merri,

    I am so excited to someday try this. Can I ask you a question? Do your boys mind wearing a CGM? I've heard they can be uncomfortable. I've been told by my doctor that Medtronic is coming out with a smaller CGM, so I've been waiting for that. But now that Mysentry is here, I don't know if I can wait! I really want to try this, but am worried that my daughter won't like wearing the CGM. I just want that peace of mind at night time, and this product sounds like this may give it to me. Thanks - Teri

  14. This is so great! I'm so glad you get to try it and I can't wait to hear more 'real life' experience!

  15. This is fantastic that someone I "know" is getting to try this thing out!!! Totally get the thing about not knowing who to use it for - I have 2 T1D kids - so have asked myself the same question about devices like this! We trialled a nocturnal hypo monitor (non-invasive chest strap thing) for several months - my bedside table was taken up with two separate receiver units - alarms going off on two different receivers all through the night - still, I'd rather have the alarms letting me know something's not right! Just wish there was some way they could build in the option to monitor more than one child with the one receiver - wishful thinking -but LOVING the look of this device - and LOVE your new blog layout!

  16. I can't hear my own alarms at night sometimes (most of the time). I want this device so badly, but financially, it's not going to happen right now. :( I'm hoping that it will either come down in price, or that insurance will pick it up. Or I win the lotto. That would work also.

  17. I am sooooo excited that you're using this! You deserve it!

  18. ahhhh the answer is YES OMG THAT IS SOOO BEAUTIFULLLL!!!!!


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