Background





Sunday, January 22, 2012

It's HERE!!

If you remember from my last post, I was very excited for Medtronic's release of their newest product MySentry.  The device is suppose to help parents hear the pump (CGM)  at night as well as see what is what is on the pump's screen.

We were trying to decide if we should wait and see if insurance will pay for this item or if we should just pay for it.  At this point in time, Medtronic is not working with insurance companies to cover this item.  It is a cash only item.  They do offer a payment plan that is interest free which is nice.  We decided to go ahead and purchase this item and try to submit to our insurance company and see if they will cover it.  I will update in a few weeks-months to what the insurance company says.  We are waiting on our first bill and then we will file.

The hook up was really easy. It only comes with three parts, a color display screen, an outpost and a power cord.  You just had to connect the pump to the display screen and then connect the outpost.   Following a few very easy instructions.  The first time the outpost did not link correctly but after the second try it worked fine. Total it took just a few minutes. 


Right away I could see how awesome this was going to be.  She was up in her room playing and the display was downstairs with us.  She was going low and pump was beeping and so was the MySentry.  I loved that I didn't have to wait for her to come down to tell me, or have to worry about her playing and wonder if she was high or low.   Of course within 30 minute of us having it her sensor died and needed to be recharged and  a new CGM site put on.  For those who don't know how it works, the transmitter charges about 20-30 minutes and then there is a warming up period of about 2 hours. During this time no data is transmitted.  That two hours seemed so long!!   But when it was time to put in that first BG the MySentry beeped and let us know.  This was really nice because before if Brianna was playing she might clear the "Meter BG Now" screen several times before letting me know.

We put the outpost in her room and then moved the display where I went, either in my room or in the kitchen.  She was playing the basement for a while with the display right at the top of the stairs and it did lose signal a few times.  But once she came back near it, it picked her right back up.

The best part so far is knowing what her number is doing without asking her a million times a day, "What's your number?"  I don't think I realized how often I did that.  I think she really likes it too.  She is able to walk over and just see her number without having to push buttons on her pump.  (In all honesty she rarely looks to see what her number is without being asked)  She does think it is really cool though. 

The next big challenge, the whole reason we got it was bed time.  Her sensor I thought was reading really well, but apparently we did a bad calibration and the sensor was not happy!  It said she was trending downward fairly quickly, when in reality she was holding steady at 138.  I will say every time her pump beeped in her room the MySentry beeped.  The volume is adjustable which is nice.  We have it on the loudest setting right now and we can hear it from the first floor when the display is on the second floor.  But back to last night.  It took a good hour for the sensor to be back linked up the her actual BG.  After that I went to sleep, it was nice that when she was starting to go upwards it beeped let me know.  I went in her room cleared her pump and corrected.  Back to sleep for me.  There was two times when the outpost and the pump went out of range.  We are planning on moving the outpost to a different outlet in her room that will hopefully fix that problem.  It also beeped weak signal.  There are sometimes at night that her pump, if we miss it, will beep weak signal so long that it will lose the sensor.  So to fix that I just had to readjust her pump so her CGM and pump were a little closer.

Before we had the MySentry, at night, she would wear a wireless microphone in her pump pack and I would have the receiver and speaker on my nightstand.  You could always hear some noise coming from her room, if it was her rolling over, coughing, her stomach growling, etc.  It was a little hard at first to hear nothing but just see the number.  I did walk down to her room once.  Got there and didn't know what else I could do.  I know it will alert me, I guess just because it is so quiet I will have to get use to it.

Here are a few pictures...

Brianna and the box!  We are so happy to get it.  It really did feel like Christmas morning!

The outside of the box. 

Up and running.  Couldn't have asked for a more perfect BG  :)
From the picture above you can see there is a lot of information on the display screen.  From left to right- B.H. is her initals.  You can add a picture under it but none of them are that great.  She was a little disappointed.  Next is the battery on the pump.  The 70u is how many units of insulin that is left in her pump.  Next is how strong the signal is.  The next two deal with the sensor.  The first is when the next calibration is due.  The other is how long the sensor has left, they say a brand new sensor last 3 days.

As other people that have gotten the MySentry have mentioned it would be nice to see how much insulin on board left.   But maybe that will be changed eventually who know  :)

Another thing that might be nice would be if there was more then one outpost.  For us we have a two story house with a basement.  It would be nice to keep an outpost in her room as well as in the basement so it is always able to pick her up.  You might be able to buy another one, but who knows. 

I am looking forward to this summer to see what the range is outside.  We have a swingset in the backyard, it would be nice for me to be able to monitor from inside and not have to yell and ask her how she feels.   We are also looking at finding an adapter so we can take this with us in the car on long trips.   This could also help me feel a little safer IF she was to go on a sleepover.  Funny how a small device that just displays a number can make me feel so much more relaxed. 

Here is what it sounds like...

video


Overall we are thrilled with it.  I hope now at night I will have a little more confidence that I will hear the alarms and maybe sleep a little better.  I know I will always either get up and do a fingerstick at least once a night or get up and look at the screen, but now those inbetween times I know it is also watching and keeping me informed. 
And that in my mind is priceless....



I will update in a few days with my thought about how things are going!  Coming up too, it Brianna's 3 month endo appointment at the beginning of Feb. 

I LOVE reading your comments and questions so post away!!

Thursday, January 5, 2012

Sleep!

Sleep. The easiest part of the day right? Most parents look forward to being able to put their little ones to sleep and relaxing, not having to worry about them for several hours.  Seriously not even thinking about will they wake up in the morning.

For parents of children with Type 1 Diabetes, sleep is anything but restful.  Remember diabetes is a 24 hour disease you never can take a break from it.  Their blood sugar can go really high or really low quickly.

Being connected on facebook lately I have been hearing about more and more kids and adults, Type 1, dying of "Dead in the Bed Syndrome."   JDRF even had a eye-opening statics that 1 in 20 kids, with Type 1, will die from Dead in the Bed Syndrome.    It is heart breaking, but it is realty.

When we were diagnosed they told us check her before she goes to bed, at midnight and then once more before morning. You would not believe the number of lows I have caught in that in-between time, when she is suppose to be safe.  In reality I checked her at LEAST every 2 hours when she was sleeping, more if she was low or going high.  Lucky for me she sleeps through most of the checks.  The checks have decreased a little since she is on a CGM, but I still have to walk down to her room to either check her pump to see the number or do a finger stick.  Her pump because it is connected to a CGM does alarm when she is going low or is high, we set what numbers it alarms at and how often.  After alarming so long it will alarm longer and then vibrate.  Guess what?  She sleeps through ALL of it.  So scary to think that it is telling her to get up you are low!!  We have tried several different things for me to be able to hear the alarm down in my room.  We have tried a baby monitor in her room.  That works okay but if there is static or if she is sleeping on the pump I might not be able to hear it.  So the next step was to get a wireless microphone and put it in her pouch and then put the receiver and speaker on my nightstand.  That again works okay.  But I hear every time she moves and there is also static.  Plus the microphone uses batteries that can die, finally had to do rechargeable, and they ALWAYS seem to die in the middle of the night. There are some nights that I am just so tried of walking down to her room to check her because she is low or on the way back up, that I just stay there and sleep with her. 

Okay not sure if anyone remember but she is almost EIGHT years old!  Not sure how much longer she is going to be okay with a baby monitor, microphones or me sleeping with her.  And I totally don't blame her.


Yesterday, a product that will help nighttime was FINALLY approved.  This product has been in the works for over 3 years with the last 18 months or so waiting on FDA approval.  Here is a link to the product.

Brianna has the Minimed Revel pump as well as the CGM.  So she is able to get this product.
The name of the product is mySentry.  When reading about it and what it could possible do, just brought me to tears.  Being able to sleep at night in my bed and being able to look over and see what the CGM graph is doing is priceless.  Actually being able to hear an alarm and respond to it quickly before she gets too low or high, priceless.  Being able to have this device when she is in the house and not having to constantly ask her what is your number, priceless.  Priceless for what it can do, but guess what it is EXPENSIVE!!  Seeing how it just came out on Jan. 4, 2012, insurance companies may or may not cover this item.  We are right now trying to see if ours will cover it.  If not we are probably going to buy it, regardless of the high price tag.  I NEED sleep, I NEED to be able to keep my daughter safe at night. 

There is also a video about parents that have tested the product out and loved it. Hearing them talk and their son talk, was amazing.  I always want Brianna to feel safe.






So when you put your kiddo to bed at night and say "See you in the morning"  consider yourself lucky.  When I tuck her in I always tell her I will be back shortly to check you. 

Hopefully one of my next posts will be of me explaining about how mySentry is working for us.  It might be a few months though.  I e-mail her endo yesterday and she said it would be a few weeks before they would write for it because the rep from the company has not talked with them about it yet.  I e-mail the rep and he said they are just learning about it now so they can talk with the hospitals and doctors offices.  Then the company reps have to talk with insurance companies to explain why this product is necessary for people and kids with T1 to have.  It is all a process that takes way to long!  And yes this does need a prescription.  Why I have no idea, but it does.



I love reading your comments so please post  :-)