Taking the CGM Plunge

DexcomI admit it – I resisted.  Mostly because I could not bear to think of having to pierce Caleb’s skin for yet another reason.  Finger sticks and pump insertions seemed like quite enough. Adding a CGM – another poke, another pain, another apparatus strapped to him – seemed too much to ask.

But it remained in the back of my mind always.  Every time we waited for the blood drop to register – that little game of roulette we play ten to twelve times a day – what number would pop up? It’s part gamble.

Caleb and I talked about it.  He bravely agreed to try it.  I nonchalantly started the insurance process expecting it to be a long series of rejections and appeals. I was still reluctant and took every step with much more time than was necessary.

Then we went out to eat for grandma’s birthday.  Caleb chose his favorite – pasta.  I will not allow diabetes to make more choices for him than necessary.  So even though I hadn’t dosed him for regular pasta in a long, long time, I gave it a try.  I weighed his portion and bolused him reducing it by an amount I remembered working back when we weren’t eating new pastas.

We were off to a good start.  Blood sugars were behaving nicely.  But then shortly after he went to bed he yelled saying he felt low.  He was 22 and he got there within minutes. We’ve never seen 22 before.  More alarming was his reaction: “Mom, why does everything look so small?”  “Mom, I feel like I’m gonna die.”

He was back in range quickly.  But I don’t want him to ever experience that again.  I couldn’t help but think CGM would help.  So I stepped up the insurance process and within a week I got the call that he was approved.

Fast forward to the first insertion:

So how is it working?

As expected.

I made the mistake of expecting miracles when Caleb started pumping.  I didn’t make that mistake with CGM.

It is helpful.  It is informative.  I appreciate having to play roulette less.  I felt a sense of relief immediately being able to watch Caleb’s blood sugar change rather than get slapped in the face every two hours or so.

But, like pumping, it’s far from perfect.  Glucose readings must be verified before acting, so we have yet to reduce finger sticks.  In fact, we’ve done more than ever to verify all the ups and downs within those ten to twelve times a day we traditionally check.  It’s not always accurate.  Sometimes it’s WAY off.  But much of the time it is meaningful.  And it’s true what everyone says: the trends are the real value, not necessarily the numbers.  But, when it does work and work well, it’s actually pretty fabulous.

I really want the theory behind CGM to be the true reality of CGM.  I want it to tell me what his sugar levels are 24 hours a day.  It doesn’t.  It doesn’t “catch” his lows and highs. It alerts us to the possibility or even likelihood of lows and highs – but sometimes not even that accurately because there is a lag between its readings and his actual blood sugar. Compound that issue with its readings being off maybe ten to twenty points and it’s easy to miss lows.  So it can catch his highs and lows, but it doesn’t do that as a rule.

So far CGM has softened the extremes in Caleb’s blood sugar readings.  It is a step forward in Caleb’s care regimen. I am glad to have it.  It is, however, a much smaller step than I would have liked.

In all fairness though, we are still new to it, and I am optimistic that our learning curve will improve and the small step will become at least a little bit bigger.

Nevertheless, it is too much to ask.

I pumped. Once.

Lorraine, Caleb's mom, with inserted OmniPod, pumping saline.
Lorraine, Caleb's mom, with inserted OmniPod, pumping saline.

That’s me.  No, that’s not a demo Pod. That’s the real thing.

No, I do not have diabetes.

When Caleb started pumping, so did I.  I wanted to know exactly what the “virtually pain-free” insertion felt like.  I had heard it compared to a finger stick. Caleb was going to endure this for the foreseeable future.  I had been able to directly feel a finger stick, so too did I want to feel a Pod insertion.

So, shortly after Caleb’s first “click”, to which he reacted with a surprising, “Yow!”, I heard my “click”.  The trainer had filled a Pod with saline and we repeated what we had just done with Caleb.

It was no finger stick.  I had my own, “Yow!” although I kept it to myself.  It was surprising because of what I had read about the pain of insertion from the Insulet site as well as from other OmniPod users.  I have never used a traditional infusion set, so I cannot directly compare, but I have heard from those who have used both and they seem to agree that the OmniPod is less painful.  With perspective, it may indeed be more like a finger stick, but it was a definite pinch.

I recently asked Caleb to talk about what the insertion feels like.  Here is a video of his response (the “Yows” are now few and far between):

I wore the saline-infusing Pod as Caleb wore his insulin-infusing Pod.  No bolus’ for me of course.  But I slept with it, showered with it and went about my life with it.  It was not in the way.  I did forget about.  It did not seem obvious under the clothes I wore.

Then, I took it off.  I ripped it right off.  It didn’t hurt.  I took it off and threw it away. That was it.  Done.  Over.

Caleb, of course, has been attached to a Pod 24/7 for the last eight hundred and twenty-five days.  Me, only three.  I pumped.  Once.

When Caleb started pumping, so did I.

I finished.  Caleb has not.

I wish it were the other way around.

Jump Start the Pump Start

One of those times the magic works!
One of those times the magic works!

We heard how great pumping would be.  There would be so much flexibility.  He would get his childhood back.  It would be much easier.  We would be able to tailor his basal for every hour.  Dosing could be as little as .05 units – so very specific.  Life would be grand!

Caleb was diagnosed in January 2007.  With everything everyone was saying, I couldn’t get him pumping fast enough.  I learned what we needed to do and did it.  We were carb counting from the day he was diagnosed – check.  I became proficient in adjusting his doses on injections – check.  We obtained insurance coverage – check.  I read Pumping Insulin from cover to cover – check.  I read the manual, got the training – check.

Caleb’s injection therapy had him eating 3 meals and 3 snacks a day of precisely the same amount of carbs at exactly the same time every day.  It was not easy.  Giving him 3/4 of a bagel for breakfast – that was depressing.  A low carb dinner allowed for a higher carb dessert, otherwise sugar free jello.  And oh how I disliked those pre-bed snacks.  I was just not a fan of eating right before going to bed.  I didn’t like finding carbs to eat – it messed up our routine.

I was ready for the miracle that everyone was describing.  We were now entering the land of eat what you want when you want. No more schedules, no more smoke and mirrors to make 50 carbs at each and every meal seem like exactly what he wanted.  Life was going to almost be like it was.  That’s what everyone was telling us.

Well, not exactly.

The rude awakening came the very first night of pumping, April 24, 2007.  Caleb’s BGs were good all day.  I was nervous because he hadn’t had his NPH that morning, but he was cruising.

Me and three kids in the house – hubby away on business.  I slept little, if at all.  We put Caleb’s first Pod on his tush.  I reminded him all day to be careful when he went to the bathroom – pull his pants over the Pod carefully.  Then that night, I myself forgot.  He woke up having to go and I helped him and ripped that Pod right off pulling his pants up or down – I don’t remember.  I just remember I had to do my first Pod change in the middle of the night.  That was not fun.

Worse than that however, were the 300s all night that would not correct.  300s???  Other than the trip to Universal Studios and the first couple of weeks post-diagnosis, we had not seen a 300.  Egad!  Correct, correct, correct.  All night.  He came down finally by morning, but I was a wreck. What happened to the miracle of pumping? The precise tailored dosing?

We did see immediately that there indeed was flexibility in what he ate.  There was no longer the 50 carb limit.  We cheered and skipped through the “beep-beep” of bolusing him for whatever amount of carbs he was eating.  We also saw right away that he did not have to eat his meals squarely on the hour.  If he was playing outside, we didn’t have to rush in for dinner.  And, yahoo! – the snacks were no longer necessary.  Would you like a snack?  Sure, no problem – “beep beep”.  But it wasn’t required.  No more panic at school for him to eat at precisely 10AM even if he was in Music. Woo hoo!  No more waiting for highs to come down with the NPH.  If he had a high (with the exception of our late night fun) we did another “beep beep” and he corrected nicely.

But I thought this little pumping machine that could deliver insulin in .05 increments – so much more specific than the .25 units we were eyeballing with syringes – would result in near perfect BGs all the time.  Wasn’t that what everyone was saying?!?!?!?!

No.  It’s what I heard, but it’s not what they were saying.

They said there would be flexibility – check.

They said he would get his childhood back – well, for the most part, check.

They said it would be much easier – check.

They said we could refine his dosing – check.

Everything we were told was true. However, with no experience and thus no perspective, those statements are subject to interpretation.  I of course now have that perspective and find myself saying all the same things, however, I know there is more to it.  I know that pumping takes commitment.  I know that you can achieve tighter control, but with tighter control comes more risks of lows, so diligence is required.  I know that pumping is indeed a wonderful improvement to Caleb’s life, but it is not perfect.

I find this dichotomy hard to handle sometimes.  I want to celebrate the advances we have today that make things so much easier, but it gives outsiders the impression that this is no big deal.  There was a report on NBC Nightly News with Brian Williams last night which gave me the same feeling.  It spoke about how much easier and manageable diabetes is today.  It is.  But it’s still very difficult and draining and stressful and restrictive at times.  Yes, it’s better and advancements have been wonderful.  But don’t forget about us world.  We still need improvements because it is far from perfect.

You decide

Caleb with his first Pod.
Caleb with his first Pod.

Deciding to pump was not hard.  Even deciding which pump was not hard.  What came after was a surprising challenge.

Six weeks after diagnosis, Caleb had his first endo appointment.  We covered many bases at this meeting, including insulin pumps.

I labor over the smallest decisions.  There is little that I take lightly.  I research, ponder, marinate, research a little more, think, inquire and finally decide.  When I decide, I am confident and committed.  By that point, I know what I want.

Pumping for Caleb was no different.

The nurse pulled out pump options and explained their advantages:

Animas: it allows for the smallest basal rate which is particularly important for children

Cozmore: it, in her opinion, had the best software

MiniMed: it has an integrated CGM

I sat with Caleb and my husband.  I listened to her describe the devices.  I waited for her to finish and asked, “what about the OmniPod“.

The nurse responded, “Caleb can’t use that.  He’s much too small.  It’s too big for his body.”

Perhaps what was said was not quite as surprising as the way it was said.  She implied that we were fools to consider it and further, we really had no clue what we were talking about. We were asked, “where did you hear about it”, as if it was important to know the source of our supposed misinformation.  We were “pooh-poohed”.

If you know me, you know that I am not afraid to speak my mind.  I am not afraid to go against the grain.  I am stubborn and outspoken.

If you know me, your eyebrows likely raised when you read the nurse’s response and you may have chuckled thinking something along the lines of, “this nurse has no idea who she is dealing with.”

A civil discussion ensued.  I explained that it was not too big.  That I knew of a child who was two when he began using it with success (Caleb was then four).  I had spoken to that child’s mother.  I explained that although I agreed the portion adhered to the body is bigger, the overall device that was effectively attached to the body was smaller.  She really tried to talk us out of it.  But her basis was invalid based upon what we knew.  We did not come to our conclusion without careful thought.  We could be wrong, but we wanted to at least give this a try.

With a smirk, she conceded.  I envisioned, “you’ll see”, going through her mind.

Shortly thereafter, Caleb began pumping with the OmniPod.  We dealt with various people at the endo office as he got started.  Everyone’s reaction included surprise that someone of Caleb’s age would use the OmniPod.  Nevertheless, they supported it.

Caleb has been pumping with the OmniPod for over two years.  We have never had any issues with the size of the Pod.  At the time, there was no one else at his endo’s office under the age of twelve using it.  For several of Caleb’s endo visits after he started pumping, the tables were turned.  We were being asked more questions than we were asking.  They could see that the OmniPod was a viable option for children Caleb’s age, and they wanted to learn from our experiences so they could advise other patients.

I believe Caleb’s endo felt they were providing reasonable guidance.  Because the OmniPod was relatively new at the time, there was not a lot to draw upon and I believe they simply made some assumptions about its use.  I am appreciative that they were willing to support our choice, even when they did not agree with it.

This experience solidified my understanding that I am my son’s greatest advocate.  Even including doctors and nurses with the best intentions, only I truly have his best interests in mind.

I will continue to research, which includes consultation with Caleb’s doctors.  However, I will continue to make decisions that I, and soon, that both Caleb and I have concluded are the best for him, either because of or despite his doctor’s advice.

To pump or not to pump

First day with the OmniPod - April 24, 2007
First day with the OmniPod - April 24, 2007

From the very beginning, when Caleb was in the hospital at diagnosis, there was talk of pumping. “Oh it will be so much easier when he’s pumping.” “Oh he’ll be able to be more of a kid when he’s pumping.” “Pumping will provide so much more freedom.”

Well why on earth are we giving him shots?

The thought of pumping at first to me was a little horrifying. I didn’t understand how it worked and my imagination formed images that I didn’t like. I envisioned a permanent “something” surgically implanted in him. It seemed very sad. Very medical. Very dependent. No one showed us what it entailed. We just heard how great it was.

I’m not sure when exactly I got over those self-formed images (which of course were all wrong), but I knew Caleb would start pumping ASAP. All I needed to hear was that it was the best way to get control, would result in the best BGs and therefore give him the brightest outlook. The rest didn’t matter. My early reading included the results of the DCCT study. Enough said. Sign us up. When do we start?

Even so, I still had reservations. In those early days I watched Caleb running around, being a three-year-old and tried to envision this device strapped to him. It seemed like the increased freedom came at the price of the loss of other freedoms. We were just picking the lesser of two evils. Sigh.

Bless our dear friends, Dan and Meri. Dan’s company was investing in this new product by Insulet Corporation – had we heard of the OmniPod? Why no. Could this be? Is there actually an insulin pump that you don’t have to be strapped to? This must be a mistake – something new and not yet approved. Why has no one else mentioned this to us????

I cannot express how fortunate we were at the timing of things. Dan’s query came at exactly the point when I was looking at the various pump options. Had he mentioned it a week later, we may have made another choice.

I did my research and I was sold. We were decided. We were going to give the OmniPod a try. Now how do we get it? And WHEN??

I was told, “Oh the insurance won’t just pay for it. Needles are cheap. Pumps are not. You will have to wait at least six months and show that you can’t control his BG on injections.” That was not appealing. I wanted to do whatever I could to keep his BGs in control. I almost felt like we were better off not keeping his BGs in range.

And that doesn’t even touch upon the fact that many insurance companies were not yet hip to the OmniPod in early 2007. Our insurance listed it as a CGMS and thus would not cover it. I was prepared for a battle. I had my ducks all lined up.

That was all misinformation however. As soon as we could, within 3 months of Caleb’s diagnosis, we submitted to our insurance our request for a pump. We were told it would likely be rejected and we would have to appeal. We didn’t. I got the call one day. “Caleb is 100% covered.” I’m sorry, can you repeat that? “This is Insulet Corporation and I’m calling to tell you that Caleb has been approved for the OmniPod, 100%.”

I was elated. It was the best news I had heard in months.

To pump or not to pump. It is a very personal decision and requires careful thought. It is not for everyone. But for Caleb we chose to pump. We are very glad that we did.