CGM update

Way back in August, when we started the CGM, I planned to update soon and often about our experience with it.  I think I have waited this long because I was freaked out by what I first saw.  Maybe I was even embarrassed a little...afraid to show you my short comings as a pancreas.

A couple of months ago, Wendy at Candy Hearts posted her "sharks teeth" and I realized that its ok not to have a perfect graph.  I am now able to focus on the information that I am gathering from the CGM and not obsess about the numbers.

Sure, we get a graph that looks like this once in a while! 

But don't let me fool you, that is not what it looks like most of the time.  It resembles something more like a rollercoaster ride.

Let me tell you what I've learned about using a Continuous Glucose Monitor thus far.  The needle for inserting the sensor is big.  Ally just looks at it and gets really anxious.  We have to use numbing cream.  The sensors are FDA approved for three days, but we use them for 6.  I find that they can be accurate for about this long.  I never try any longer than that because I don't want to risk irritating the insertion site.  As it is, we have very little real estate to use since have both a pump infusion site and now CGM site.

At first it was frustrating that the numbers on the CGM did not "match" the numbers on her blood sugar meter.  I KNOW that there is a lag time since the CGM is measuring glucose in the interstitial fluid instead of in the blood.  But for some reason it still frustrated me!  The thing is that I started really LOVING the CGM when I learned that it's not the numbers that are important.  It's all about the trends!  I look for periods of time when her blood sugar is rising, or falling, on a consistent basis.  This allows me to make the appropriate changes in her basal rates and insulin-carb ratios.

The sensor data has helped me to realize that Ally MUST PRE-BOLUS for meals.  You can totally see the BG spiking on the CGM screen when you don't do this.  Pre-bolusing doesn't give you perfect numbers, but it has definitely dulled the spike in most cases.  Prior to using the sensor, Ally would test in range before a meal and then at the three hour mark afterwards she would be in range.  We assumed that she was remaining in range for that whole time.  Boy were we surprised to see the spikes in between!

The CGM alarms can be annoying.  But it is totally worth it to me to be annoyed once in a while if it is going to prevent Ally from having severe hypoglycemic episodes.  And that it does!  We have a significantly lower number of low blood sugars each week.  This is not because "we've got it all figured out and she is in good control."  It is because the CGM alerts us to let us know that a low is predicted.  Her BG is on its way down.  We are able to "troubleshoot", you know with a little Juicy Juice or glucose tablet, heading off the impending low.

I also love that it is sort of a checks n balance system while she is at school.  When the nurse calls me and says, "We have a birthday treat today.  It's a cupcake,"  we use the sensor data to help us make a decision about bolusing for that cupcake.

My most favorite feature of the CGM are the arrows.  Oh, the arrows!!  When I would check Ally's BG before we had a CGM, I would see that it was in range and think we are good.  But then I would wonder, is she going up or going down?  Especially before exercise, when she is about to get on the bus for a 45 minute ride or even at bedtime.  The arrows help me to decide if she may be dropping and need something to ward off the low or possibly her blood sugar is on the rise. 

I have to say that I am not a fan of the insertion device.  It has a "jabbing" effect in which, I think, it puts it in hard.  But with that being said, (using the numbing cream) Ally usually doesn't flinch.  Although this insertion happens only after we have had about 10 minutes of anxiety leading up to it just because she can "see" the large needle.  And it doesn't work to tell her to look away!  BUT...read on.  Better things are coming!

I once read an article on A Sweet Life about Medtronics newest insulin pump, the Minimed Revel.  We upgraded Ally' MM Paradigm pump to the Revel last fall when she started using the CGM.  This article has a really good description of what is new on the Revel as compared to the Paradigm.  I also enjoyed reading the answer to the question proposed "What’s next in the pipeline from Minimed in terms of pumps and CGMs in the US?"  Specifically related to CGMs this is what they said,

"As for CGM, our next sensors will have greater accuracy and a more comfortable insertion process."

This weekend, I attended the Children With Diabetes Focus on Technology conference with Hallie from The Princess and The Pump and another D Mama friend, Kelly, and her family.  They also spoke about Medtronic's CGMs in the pipeline.  Some of the features that I heard about this new sensor that is currently in FDA review:

• six day sensor (instead of the current three day one).
• smaller needle
• better inserting device
• half the size of the current sensor
• much better accuracy

Yay!!  That all sounds wonderful!  Technology just keeps getting better and better.  I can't wait to see this new sensor.

And just for fun...Check out Texting My Pancreas, when Kim shared a hilarious comic strip that she made to describe The Seven Evolutionary Phases of Her CGM Ownership.

I Know What This Is For!

Hmmm...What is this? 

Oh yeah, I know what this is for!

Let's see.  This is what Ally does...

Oh look!  

I found a test strip (never mind that it has already been used)! 

This strip thing goes right in this hole.

 Oh wait!  The screen is still blank. 

I think I need to turn this strip over! 

 (notice the white side up in previous picture)

Ok, I found the alcohol pad. 

I'm not sure what to do with this, so I'll just lay it over here.

I'm supposed to hold this thing on my finger.  

I don't know how long to hold it there. 

Ok, guess that's long enough. 

Then I'm supposed to touch the end of this strip. 

Not sure why, but that's what Ally does.

All done.  I'll just close it up now.

  

And now I just have to figure out how to use this zipper.

  

And that's what my big sister does!

(Lexi is 18 months old.  Her sister, Ally, has type 1 diabetes.  She does not.  I walked in on her "playing" with the blood glucose meter, so I just watched.  Sorry the pictures are not very clear, but all I had with me was my phone and I didn't want to miss it!)

Summer Camp On My Mind

Diabetes Summer Camp is on the brain!  Not just my brain...but Ally's brain too.  When we recently had our endocrinologist visit, we also had our annual meeting with the social worker.  Ally is not a big "talker" when it comes to people outside of her little world.  It takes her half of the school year to even warm up to her teacher.  I just knew that this was going to be an awkward meeting because Ally would shrug her shoulders and say, "I don't know" in answer to the social workers questions and prompts.  So we sat down, I held my breath, and the social worker asked Ally if there was anything that she'd like to talk about.  Ally quickly started talking about how much she wants to go to Diabetes Camp this summer and Did she have any information about that?

It looks like Ally is not alone in thinking about Diabetes Summer Camp.   Haley and Kelly wrote about their Diabetes Camp experiences on Naturally Sweett's blog last month. 

My initial reaction to sending my soon to be 8 year old away for a week is NO WAY!!  I know my girl and I know that she is very timid.  It takes her so long to warm up to a new situation and feel comfortable.  I worry that she will be homesick.  I'm concerned that she will worry about her health needs.  Will the stress of being away from home cause the exciting camp experience to backfire?

I promised myself that I would give it a hard look...with an open mind.  I need to do this for her. 

It would be a good opportunity for my husband and I to have special time with the other two girls, especially Jessi.  I only say that because Lexi is probably too young to understand that Ally gets a lot of D related attention.  You and I know that neither of the girls would really appreciate the kind of attention I'm talking about, in the D sense.  But they don't see it that way.  They only see that someone else is getting more attention than they are...a lot of the time.

I would be able to sleep a whole night through (although chances are that I will be lying awake wondering if she is ok).

Above all I KNOW that this would be the BEST opportunity ever for Ally!  She would have the chance to feel that "SAME" - the way that I felt when I started making connections in the DOC.  It is an amazing feeling to know that you are not alone.  I want Ally to feel that.  I can't imagine how isolated she must feel at times.  I try so hard to imagine what it is like to live with diabetes every single day...but at the end of the day I don't have diabetes.

It would also be a great chance for her to gain some independence in her own diabetes care. 

Ok...I'm about to hyperventilate here just thinking about it.  sigh.  breathe.  breathe.  breathe.

I cry every time that I think about Ally being gone for a whole week.  I can't imagine how I will hold it together when the day comes that I have to drop her off at camp.  I can't imagine what I will do with myself all week...except for missing my girl.

I'm afraid she will be homesick.  I am slightly worried about puting her diabetes care in the hands of strangers for a whole week!  I am just going to miss her beautiful spirit.

Now, with all that being said...did you notice that I said "I am going to..."  If she feels ready, I will totally encourage her..I'll just be going crazy on the inside.  I know what a wonderful opportunity this will be for Ally and I want that for her.  So, we will just have to see if she feels ready this year.  But if not, I know that she will be ready sometime in the near future.

Now, tell me.  Is your child going to sleep away camp this year?  Will this be his or her first time?  If not, I could use all the tips I can get...just in case this ends up being a go for us this year!


**Ironically, just as I was about to publish this blog post, I received an email notifying me of this program offered by Lilly Diabetes and the American Diabetes Association...

Today Lilly Diabetes announced it will help children with diabetes attend summer camp by donating 88 scholarships to the American Diabetes Association’s 2011 campership program – one scholarship for each year Lilly Diabetes has supported the needs of those living with diabetes, beginning in 1923 when Lilly introduced the world's first commercial insulin.

I love that they are making Diabetes Summer Camp a possibility for some children who may not otherwise have been able to attend.

Oh, School Nurse, How Do I Love Thee!

Mrs. P is the nurse at Ally's school.  (To protect her identity, even though I'd like to scream her name from the mountain tops, I will call her Nurse P.)  I may best describe her as an angel here on earth!

If you read my post Day In The Life from last May, you will know that I worry a lot about Ally being away from home, away from me, for 8+ hours a day.  Even though it was written last year when she was just a first grader, I still have the same feelings throughout the school day.  I notice the clock at each scheduled blood glucose check time.  I hold my breath for a few minutes, wondering if the nurse will call.  Then I have a little sigh of relief and wait until the next BG check time, ultimately looking forward to seeing her get off the bus at 4:05pm. 

The only thing that gets me through these school days is the confidence that I have in our school nurse.  She is AWESOME!

Dear School Nurse, How do I love thee?

Let me count the ways!!!

She thanks me for all that I do for Ally.  Let me say that again....She thanks me for all that I do for Ally.  Her words, "I appreciate the time and dedication you take with Ally."

She advocates for Ally.  Last year when H1N1 was a concern, she moved all of Ally's D supplies out of the clinic and arranged for her to use the principal's office for all D management in order to keep her away from the "sick" kids.

When Ally buys school lunch (which is not often), she walks down to the cafeteria with her and makes sure that Ally gets exactly what I requested and also what she has pre-bolused for.  She worked with the food service staff so that now the monthly school lunch menu includes carb counts for all foods.

She encourages Ally's independence by allowing her to check her own BG, change lancets,  enter info into her pump, and record info on the log slip (the one that comes home to me; nurse records on school log book).  Of course she is looking over her shoulder the whole time!

She tells me when Ally's D supplies are running low.

She is aware that I have been making some adjustments in Ally's basal rate and carb ratios lately.  So she called me today with a full explanation of Ally's BG numbers.  (I usually recieve a slip of paper each day listing all of Ally's BG numbers, carbs, coverage, etc for the day.)  She took the time to discuss with me what "could" be happening.  She really feels part of Ally's diabetes management team.  She said, "This is what I did"..."would you have done anything different?"

She praises Ally for recognizing "low" symptoms.

Some of this may sound easy to you, but let me assure you that Nurse P is one busy lady! Ally attends the public school in our community. This grade 1-5 elementary school has approximately 50 classrooms. With an average of 25 students in each class, that is about 1250 students! It is so large that they have 2 principals, so you either attend the "West" or the "East" side of the school. In many ways they function as two separate schools, even though it really is only one. Nurse P is the sole nurse for all 1250 students.

She acts as the liason between our family and the school, communicating with the teachers often about Ally.  We recently adjusted some of Ally's basal rates and I get a little concerned about lows when we do.  Without my asking, Nurse P said, "I'll let Mrs. M (classroom teacher) know that we are making some changes so that she understands if Ally needs to make extra trips to the clinic for a few days.  WITHOUT MY ASKING!

She knows when Ally's teacher is absent and lets me know (not that I can do anything about it, but if she's taking the time to tell me then I know she is taking the time to touch base with the sub).  Again, let me reiterate that there are 50 classroom teachers in this building!  She makes it her business to notice when Ally's teacher is not there.

She has five type 1 students in this school.  We all don't handle things the same way.  Only two of the girls are pumping.  Ally goes to a different endocrinologist than the others.   Some bolus after meals; We pre-bolus.  Some are allowed "free" snacks if they are 15 carbs or less; We bolus for all carbs!  So Nurse P has a lot of factors to remember for each T1 student.  They are all on different schedules, but if Ally doesn't come to the clinic at one of her BG check times, she calls down to the classroom to remind them.

She gets it.  She understands the seriousness of this disease.  She is diligent.  She is confident.  She is not too proud to ask me if she doesn't know.

Does Nurse P make mistakes?  Sure.  Does she occasionally make a judgement call that may be different than what I would do?  Yes.  But do any of us get D right all of the time?  NO WAY!

And did I mention that she thanks me!!!  I LOVE HER!

I know that others do not have a wonderfully awesome nurse like we do.  Some don't even have school nurses!  (So sorry Meri!)  So, I do not take for granted for one day how lucky we are to have Nurse P.  It makes my days away from Ally that much more bearable.

A few other experiences with school nurses that you may be interested in:
The Sugar Kids
We CARA Lot
My Diabetic Child