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!
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Snake Oil

WEGO Health Prompt: Day 28 – Write about how you deal with... snake oil

Snake oil.  My least favorite thing to deal with when discussing diabetes.  If one more well-meaning person tells me I should put Rosie on Cinnamon or Blue Algae or any other "miracle cure", I'm going to scream! 

OK, OK, I won't really scream... but I'd like to.   I am generally pretty good about responding with a short version of the difference in Type I and Type II, and how those things might help control the blood sugars of someone with Type II, but they can't help Rosie because her pancreas is dead. 

Of course there are those who want to argue-- it's happened to me more than once-- and I generally have to walk away at that point.  It's not worth me getting upset to try and talk to someone who is clearly not educated/ willing to learn on the subject.

. I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Tired of Fighting

Rosie had a minor surgery last Tuesday.  Last Wednesday we received a letter stating that insurance was denying our claim... yep, one day AFTER it was done.  Nevermind that it was preapproved at 100%, or that multiple people confirmed that.  We still have to fight and stress and pray that they will honor their prior commitment to pay.

I don't claim to know how to fix our healthcare system... but I know that I'm sick and tired of fighting it all the time!

  I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Summer Break

My kids are officially on summer break.  The end of the school year means so many things for the kids- no more early-early mornings, a more relaxed schedule, no homework, more fun.  And most significantly for me: no more dealing with the school's Clinic Aide and praying that she doesn't mess up Rosie's stuff each day.  

The kids will be at a babysitter part-time this summer, and she's great with the d-related stuff.  I've explained things once or twice, she's understood, and we've moved right along.  She calls me any time there's a question and she makes great judgement calls as to how to handle day-to-day stuff.   Ahhhh.... such a relief to know Rosie will be there instead of under the "care" of the Clinic Aide.

I've worked really hard to restrain myself this school year in dealing with the CA.  We had one confrontation at the beginning of the school year, and a meeting to follow-up.  Since then, I've done my best to let little things slide and to ignore her obvious incompetence unless it was something that would directly impact Rosie's health.  Rosie is old enough now (age 9) that she can handle a lot of things on her own. We took care of the necessities and that was about it.

A week before school was out, though, I had had it.  Rosie came off the bus upset and complaining about the CA being "mean again" and listed several things that had happened that week.  I wrote a lengthy email to the school district nurse supervisor and to the principal detailing the most recent problems.  I respectfully requested that Rosie should be removed from the care of this woman for the next school year and I offered some ideas of ways we could make that happen.  Since we're in a private school, we don't have a 504, because I was initially told by the CA that they don't use them... but I think it's time that we change that.  (I'm wiser now to the way the law works in this area!)   

The principal and nurse both responded that they'd like to meet with me and address my concerns after school was out.... perfectly reasonable since the last week of school is busy for everyone.   I anticipate a call this week, and if the principal hasn't called within a few days I'll call her.  

To be continued...

   

Nasty Low, Aisle Six

To passers-by, she probably looked like a bored or pouting child, sitting there staring straight ahead and clutching a giant bottle of soda.   To me, she looked like a sick kid fighting back tears and fighting to stay focused on the moment.

We were in the store about an hour when it hit: a bad low.   The kind that comes out of nowhere and causes Rosie's eyes to be "fuzzy" in a matter of seconds.  She went from chatting and laughing to the verge of tears in about 30 seconds.  Her Dex showed her in the 70's and dropping, but she told me she knew she was already lower than that.  I normally have glucose in my purse, but I was out-- in fact, there was a bottle at the bottom of our cart waiting to be purchased.  The lines at the check-outs were insanely long. 

I decided to buy Rosie a soda through the self-check lanes (which had the shortest lines) and have her sit by the nail salon until I could join her.  I abandoned my cart, rushed through the self-check line, and settled Rosie in with her bottle of soda.  She took several big swigs and sat, staring blankly ahead.  I asked her if she'd be ok if I went and got in line, and she said yes.   I could see her from my place in line, but she wasn't seeing me-- she had that "zombie stare" that she gets when she's really out of it.  I don't think a wait in line has ever seemed so long to me.

I finally get through the line, rush over to Rosie, and sit down next to her.  She immediately tries to crawl in my lap- a sure sign that she's feeling rotten.   We sit together and watch the crowd for a while, until she feels strong enough to walk to the car.   We make the ten minute drive home and within half an hour she's ready to go play outside with her friends, like nothing ever happened.

There's nothing I hate more than these crazy, out-of-nowhere lows.  She feels rotten, and I feel so helpless.  What would have been a routine shopping trip for anyone else was turned into a near-emergency situation, and I doubt that most people around us had any clue that anything was wrong. 

 

"Magic Cure" Comments

Today I received a new comment on an old post over at my other blog with someone claiming that the Lord led them to a healing center where they were cured of diabetes, and all I need to do is have faith and get to that place. 

Now, don't get me wrong, I am a firm believer in the power of God... but comments like that, especially anonymous comments, really bother me.    I'm offended both as a d-caregiver and as a Christian, because I don't think things like this do much for promoting faith to those who are not believers.   In fact, if I wasn't a Christian, I'd probably chalk this up to just another one of those crazy "church people".  

I'd be willing to bet that the person was "cured" of Type II Diabetes, not Type I, which either means that they didn't read enough on my blog to notice what kind we're dealing with, or, they  have no idea what the differences in the two types are.

If I, or a family member, had truly been miraculously cured of something, you can bet my name would be on any comments or references I made to such healing.  My name and comments of praise would be all over the DOC and anywhere else I thought I could reach people.  The fact that this comment is anonymous seems fishy to me... even more so since it's on an old, old post that has nothing to do with diabetes. 

Grrrr.  Anyone else tired of these kinds of comments?   Or am I just especially tired/grumpy/cynical?  ;)