Our D-history:

My daughter, *Rosie, was five years old when she was diagnosed on September 19, 2008, with Type I Diabetes. We started out on MDI, but in October 2010 we switched to a pump. We also added a Dexcom CGM in May of 2011. In February 2014 we changed to the Medtronic Enlite system- a pump and CGM all in one.

*Rosie is not her real name... I let her pick her own pseudonym for the blog!

Saturday, March 1, 2014

Two Weeks on Enlite: Frustrating

Right now, we're not so sure we should have switched.   To be fair, this has been an unusually tough two weeks for our family.  My sister-in-law passed away after being unexpectedly diagnosed just a month earlier with cancer.  There have been some other unusual things happening with family.  To say that these two weeks have been stressful is putting it mildly.

In the midst of everything else, though, we have been dealing with the Enlite.   And that's how we feel about it right now.... we're dealing with it.  Right now, our issues are:
  • The majority of the time when Rosie enters a blood sugar reading, it then alarms and tells her there's a calibration error.  
  • It's alarming so often that Rosie is now ignoring the alarms and sometimes shuts them off without even reading them.... which defeats the purpose of the alarms.  We're working on this with her, but she's 10, and the constant alarms are embarrassing to her. 
  • I have never personally seen the reading be closer than 30-40 points off from a finger stick reading.   Rosie says it has been closer a few times at school.   (Our Dexcom was often exactly the same as the finger stick number we would enter.)
  • At night, if Rosie has a heavy blanket on, I can't hear the alarms.  With her Dexcom we put it on her nightstand, and I could clearly hear the alarm a few doors down in my bedroom.  We're going to have to go back to using a baby monitor. 
  • We went through four sensors in the first week.  The first few days seemed to be fine, but then Rosie had three come out within the next few days.  We've resorted to adding strips of IV3000 patches over top of the sensor just to keep it in.
So, we're frustrated.  This weekend one of my goals is to sit down with the manual and try to figure out how to make this thing work better for us.  If I can't figure it out, I'll call our trainer and hopefully she will be able to help us.  I know many people have been happy with this new system, so I'm hoping that we have just not had the time to work out the bugs yet and we will soon find a way to make this system work better for us.

P.S.  In the time it took for me to type this post it has alarmed twice.  Once to tell Rosie there was a calibration error (half an hour after she entered a finger stick number--??) and then a few minutes later to tell her to put in a new sensor.  That sensor was new four hours ago.   Arrrrghhhhhh!

Tuesday, February 18, 2014

Upgraded to the Enlite

Long time, no blog... and I'm OK with that.  :)   I enjoy blogging, and still read many DOC blogs, but I've made a concentrated effort to spend more time offline.  That said, though, I had to post an update on Rosie.

On Saturday, we officially switched to the Medtronic Enlite system... meaning that she is no longer wearing a Dexcom CGM, but now has a CGM integrated into her pump.  (Please note that we loved our Dexcom, but switched on the recommendation of our endo, and also so that Rosie only has to carry/wear one device now.)

After three days on the system, here are my observations:
  •  This thing alarms a LOT.  I'm sure there are ways to change/reduce the alarms even further than we have, but wow.... the first day I think it was alarming at least once an hour.  It thought she was high (she wasn't), it thought she was low (she wasn't), it wanted more blood sugars (done).  Yikes.  That reminds me... I need to email her teachers and warn them that we're still learning about this new device and it might disrupt class.
  • We inserted Rosie's first site in the right side of her stomach, and she hasn't had any trouble with it at all.  This is a victory for us, as she has a history of reacting to various medical tapes and adhesives. I like that the adhesive includes a strip over top of the receiver, as we almost lost her last one one time  when the clips on the site broke while she was wearing it.
  • So far, the numbers are not as accurate as I'd like.  We've been a good 30-40 points off, at minimum, every time she's poked her finger.  I'm hoping this will improve with use.  If we have to poke her finger 6-8 times per day just to keep this calibrated, I'm not sure it's worth it.   We only had to poke 3-4 times per day to keep her Dex in line.
So... we'll see.  I have very mixed feelings about the switch right now, and so does Rosie.  

Saturday, September 21, 2013

Five Years

It was five years ago this week- 9/19/08-  that Rosie was diagnosed.

Every year, the date has kind of weighed on me.  I'd replay things in my mind and think about all the ways our lives have been changed due to this disease.  This year?  Other than a vague feeling that I was forgetting to do something all day, the day came and went without any fanfare.

Five years of finger pokes, carb counting, and sleepless nights.  That's a lot, yet just a drop in the bucket compared to the many years Rosie has ahead of her.  A cure can't come soon enough.

Sunday, August 25, 2013

5th grade: So far, so good!

Rosie has been back in school for nine days now.  I have only received one call from the Clinic Aide, and that was about some missing paperwork that the endo's office hasn't faxed yet. I think it's a record-- usually by this time I've been in to "chat" with the Clinic Aide about some kind of problem at least once!

Rosie has a plastic shoe box with supplies in her homeroom.  She tests in the classroom as needed.  When she changes classrooms for various subjects, she carries glucose with her in her pump belt, and generally can rely on her Dexcom to see if she's going low.  If needed, she can leave the other classrooms and go to the clinic to test.  

She's run a little on the low side nearly every day, which tends to happen at the start of every school year with the changes in routine.  She's been able to treat/test herself and has done really well.  I'm so proud of her!