Caleb’s 1st Complete Pod Change – Part One

No bubbles

Caleb has often helped change his Pod, but he has never done a complete change from beginning to end. There’s a level of dexterity necessarily to fill the syringe that fills the Pod. Considering the size of the needle used to do this, I have always interceded at this step. (I once stabbed the tip of my finger with that needle – it left an entry and exit wound and a half inch bruise from one point to the other. That thing is serious.)

But Caleb is seven now, and is showing more independence and responsibility in many aspects of life. Why not diabetes too?

When asked if he wanted to do the whole change, his face lit up, “really?”

With some expired supplies, our extra PDM, and his good friend Rufus, Caleb practiced. He did beautifully. I’ve always thought the hardest part of a Pod change is getting the bubbles out of the syringe. He listened to my instruction and did it with relative ease. Much better than my first time, that’s for sure.

Since then, the favorite thing to do in the house is to care for Rufus with bolus’, injections, bg checks and lots of love.

Here’s the video I put together of this monumental occasion.  Stay tuned for Part Two.

Our Happy DexCom Friends – video trifecta

As we began our CGM adventure with much trepidation, we were embraced, truly embraced, by our friends Bill and Suzanne.

I think the first time I “met” Bill was when he commented on Caleb’s low video and dubbed him a “Diabetic Ninja“.  Shortly thereafter he named Caleb “Diabetic of the Day”  in one of his own videos. Bill was one of the first people who found us through Caleb’s face on YouTube.  I remember how Caleb smiled when he saw that he was in Bill’s video.  As I’m sure was intended, it made him happy.

We have kept in touch with Bill and he and Caleb even have a friendly rivalry over their favorite baseball teams – Bill’s Red Sox v. Caleb’s Yankees.

Through Bill, we met Suzanne.  Suzanne and I tweeted a great deal about DexCom. She answered my unending questions and understood my apprehensions about putting Caleb through another skin piercing process.  She knew of Caleb and Bill’s relationship and asked if a video from Bill might help us prepare for our training.  Of course the answer was, “yes”.

So Bill and Caleb made a deal to make videos for each other.  Here’s Bill’s:

Suzanne also joined in the video encouragement:

To which Caleb responded:

Bill and Suzanne helped us so much through our CGM transition.  They went out of their way to make these videos for Caleb and sent us many heartfelt emails and tweets.  Thank you my happy diabetic friends!

“It’s all about your attitude!” Yours are fantastic, influential and even contagious!!

The Olympics Begin and We Root for Kris Freeman!

Kris Freeman, cross-country skier, is competing with the US Ski Team in this year’s Olympic Games. He is a serious medal contender in all three cross-country skiing distance events.  Kris has type 1 diabetes and like Caleb, uses the OmniPod insulin management system.

We will be watching and rooting! Good luck Kris! To say that you are an inspiration is an understatement.  I am simply in awe of you, your attitude and what you are able to accomplish.  You have my utmost respect and then some.

Vodpod videos no longer available.

The results are in…

Caleb Prize
Caleb with his prize as a finalist in Nick's Simple Wins contest - autographed picture of Nick Jonas.

…and Caleb is one of the grand prize winners of Nick’s Simple Wins contest.  The Grand Prize?  Meeting Nick Jonas in Orlando!!

We could not have done it without all of you who watched his video!  Thank you so much!!  In addition to our “offline” friends and family, our Facebook and Twitter friends came through with force and helped him win!  Thank you for watching and posting and retweeting!!

If you didn’t catch the contest video, you can watch it by clicking on the above link (he sounds so funny without his front teeth – a lot happens in six months!).

Here’s the original version we did not submit because the rules strictly prohibited logo usage, but since we are in the middle of the World Series I thought it would be fun to include.  And if you haven’t seen enough of Caleb (which I know you have – sorry) here’s another entry he did just because he’s a crazy nut.

Caleb is very excited.  Thank you for giving this gift to him.  I have no doubt this will be an experience that he will treasure always.

She just wanted some milk.

Lila
Lila

Lila is four.  Caleb was just shy of his fourth birthday when he was diagnosed.  In both appearance and personality, Lila tends to be more like Caleb than older brother Colin.  For some reason that has always made me think that if either Lila or Colin were to develop D, it would more likely be Lila.  Not logical, but it’s what I have always thought.

Driving home from preschool the other day, out of the blue Lila says, “Mom, can I have some milk?”  Lila has always enjoyed milk, but with her meals.  She has never been one to drink much beyond that, and if she does, it’s water.  For about a month before the light bulb went on that something might be up with Caleb, he requested milk.  It should have been a reg flag, but I was clueless. “Icy, icy cold milk,” he wanted.  Visions of him asking for it are etched in my memory because at the time, I just thought he was growing.  But it was a telltale sign of diabetes that I completely missed.

So when Lila repeated Caleb’s request, a pit formed in my stomach.  I started to think about the other symptoms.  Frequent urination – nope, not at all.  Lethargy – no way.  Weight loss – I really don’t think so.

But I couldn’t get beyond the taboo milk request.

We arrived home, unpacked her backpack as usual, and sat down at the kitchen table.  We’ve done it before, so it’s not a big deal – I ask Lila if I can check her sugar. “Sure Mom.”  I prick her finger, the test strip soaks up the blood and the five seconds of wait, which seem like an eternity, begin.  I’m telling myself this is not a big deal. She’s just thirsty.  She has no other signs.

Then the number pops up. 257. IMG_1783

Well that was not what I was expecting.  “Lila, let’s wash your hands.” “Okay mom.”

Another prick, another blood soak – error.  Another prick, another blood soak – error.  I’m trying not to panic.  But I am now thinking of the logistics of calling my husband to come home.  Do we go straight to the hospital or call Caleb’s endo?  Who’s going to get the boys from the bus stop?  Can we get her pumping right now?  Will insurance drop us with two diabetics?  And most of all, the flood of memories of Caleb’s diagnosis comes back to me in a wave.  Lila is starting to get anxious with the pokes and now they hurt.  How am I going to to get her through what lies ahead – shots, insertions, more finger sticks.  I’m looking at her in the eyes, trying to stay calm, but my heart is breaking.

Another poke, another soak. 168.  Not what I was hoping for.

I finally give her the milk she requested and the cookies from lunch she didn’t finish at school.  We go about our normal routine although I have little ability to process thought.  We are communicating, but I have no clue what I am saying because I’m still thinking about the hours and days and weeks and years ahead.  I give it about fifteen minutes, pull out a completely different meter, and we do another poke and another soak.

104.

That’s more like it.

Just like that, life resumes to normal.  My shoulders drop a little from the relief.  I give Lila a big hug and she is oblivious to the future I envisioned for her over the last twenty minutes.

Just to be sure, I checked her sugar later that day, 84 and the following morning, 82.

All she wanted was a glass of milk.

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.

Honeymoon schmoneymoon

IMG_1094When Caleb was diagnosed, we were told he would have to wait at least six months for an insulin pump.  We were told insurance would not cover it until we could show that injections weren’t working. I have since heard that some doctors will not prescribe a pump until a year after diagnosis because they prefer their patients not start until the honeymoon is over.

The good news is, Caleb did not have to wait to start pumping.  He had his first Pod on about 3 months after diagnosis.  The not so good news is that the first year and a half of pumping was a struggle.  Well, diabetes is always a challenge.  We still struggle. But for that first year and a half, stress and confusion were abundant.

I attribute this to a few factors:

(1) achieving tight control of a diabetic’s blood sugar is plain and simply hard and I was new at it,

(2) there is little in life that I haven’t been able to conquer that I really wanted to and for a long time I believed I could achieve consistently good BGs simply by putting in time and effort,

(3) using only fast acting insulin is a very different and more sensitive therapy than one with a longer acting insulin which seems to soak up  some of the “extra” variables, and

(4) we were managing insulin dosing with an erratic, fickle pancreas that produced some level of insulin without rhyme or reason and without notice, aka: the honeymoon.

Caleb’s honeymoon and its subsequent deterioration has never been medically tested. However, over time, I saw gradual changes in two areas.  His overall dosing would creep up and plateau and creep up and plateau.  Each time it flattened out, I would say, “Okay, the honeymoon is over”, only to be proven wrong and go through it all over again.  The other thing that changed was the reaction Caleb’s BG had to various foods. Every once in a while a food that never before posed any issue would cause erratic blood sugar readings. When first diagnosed, there were no problem foods at all.  Even pasta and pizza were just like everything else.  Pasta was the first to cause problems.  Then gradually pizza and chinese food joined the mix.  I would get the dosing down for them, only for it to change.  Then anything processed or fried started to wreak havoc.  Chicken fingers and fries became cursed foods.  Later ice cream and others.

Nights were by far the hardest with which to deal.  Between the hours of 8PM and midnight, Caleb’s insulin dosing was anyone’s guess.  We would go through periods of dinners of protein and veggies for weeks in order to figure out his basal pattern, to no avail.  His insulin needs would go up, up, up then down, down down. Up and down; high and low.  I had different spreadsheets for his basals, his carbs, his BGs.  I tracked his corrections and treatments.  I mapped his dosing and BGs by hour for any “challenging” food every time he ate it.  I even had a legend detailing various foods and their dosing “exceptions”.  I am a finance person.  I am accustomed to trends and analyses.  If I analyzed this long enough, and in enough detail, I would solve this puzzle. Or so I thought.

Then, when I thought it could not get any worse or more erratic, the bottom fell out.  Over just a few months, his basal TDD went from three units to six and then eight.  The breakfasts of oatmeal or Costco bagels that had been such friendly alternatives were now added to “the list” of foods.  All the rules had changed and things had to be relearned.  It was like going through diagnosis or pump start all over again.

Initially, each time Caleb took what I call another “step” out of the honeymoon, I would feel sad.  I would think his pancreas had completely failed and I mourned for it.  Of course, I was always wrong, and it would take another, albeit smaller, gasp for life and peter on.  We went through this so many times, that by the time it did go completely kaput, nearly two years after diagnosis, I was relieved.  With so many variables to manage when caring for someone living with diabetes, I was happy that the unpredictabilities a schizophrenic pancreas pose were no longer among them.

So perhaps, for some, it is wise to wait a year after diagnosis before pumping.  However, despite the grief I believe it posed for us, I am still pleased with our decision to start pumping quickly and would do it all over again.

D Tweeps to the rescue!

On the way to the game
On the way to the game

This is a shout out to my friends on Twitter.

Yesterday, we went to an MLB game. MLB stadium means stadium food. Stadium food means unknown carbs and usually not the best food which typically means out of range BGs and stress and anxiety.

Yesterday was different.  We got to the stadium at lunch time and decided to eat. Caleb ordered up a hotdog and the kid’s special came with Kozy Shack pudding – I could handle that.  We’ve done hot dogs often enough and I did a Calorie King search on my phone for the pudding: up to 44 carbs.  Then Caleb’s brother asked for a pretzel – one of the enormous, soft, stadium pretzels.  We got a couple to share.  Okay I could do this.  I did a Google search and a Calorie King search and the results were mixed.  I saw anything from 45 to 101 carbs.  Hmmm.  How do I decide?

Normally in this circumstance I begin to tense.  I am typically surrounded by three children with various questions and needs and all vocalizing them simultaneously.  Any adults present, although aware of the extra work D takes, do not truly appreciate the implications that eating unknown carbs of unusual foods have.  I am alone with this responsibility.  I need to think and think quickly while trying to meet the various other needs of, “I’m hot”, “When will the game start?” “Can I have ketchup with that?”  “Did you see the train pass by?” “Look there’s Jeter!”  You get the picture.

Well yesterday I had a different approach.  I tweeted, “How many carbs in a stadium pretzel?”  Here are some of the responses I received within minutes:IMG_0665

The results were similar to what I had already found from my own searches.  The difference was that I did not feel isolated.  I had people surrounding me who understood.  People who wanted to help.  People who validated what a was considering.  I literally felt like they were there beside me, whispering in my ear, giving me advice and support to make this decision.  I was not alone.

So I took the information and made a decision with the help of my Tweeps, bolused Caleb and we all ate.  I was not stressed and tensed.  I did not feel this big weight on my shoulders wondering if I had made the right decision.  I had input from others.  We did this together.

Yankee Stadium July 18, 2009
Yankee Stadium July 18, 2009

The good news is, Caleb’s BGs were great.  This was the first time an outing was not a disaster of lows or highs or both.  There was no gray cloud of D casting its shadow on our fun.  Although I think part of that is attributable to the alignment of the planets, I know it also had to do with me being able to make good carb decisions.  Caleb felt good, I felt good.  It was indeed a victory.

So thank you Tweeps for being there with me yesterday.  You helped make the day more enjoyable.

Oh and A-Rod hit a homer, Jeter made a great play to first and Mo did what Mo does best and the Yankees had a victory too.  It was a great outing all 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.