Finally

Have you ever lost touch with a close friend?

Ever let so much time go by without talking that you just didn't know where to begin?

And even when something truly wonderful happens, your shame at having let this friend fall so far out of your life prevents you from sharing it with them.

Well, that's how I've been feeling for quite a while now.

About this blog-- and about all of you.

So I'm just gonna jump in where I left off and see what happens...

Joseph loves the Ping-- we all do.

His new pump and meter arrived over the Christmas break and turned out to be quite the gift.

"Mom, look at this screen!" my boy exclaimed after we powered up the pump, "it's... beautiful."

I had to agree. Definitely more readable than its predecessor.

In addition to the fabulous color screen, I love that we can use his meter to see how much insulin Joseph has on board from another room. And as I mentioned in my previous post, giving him a corrective dose of insulin while he sleeps is sooo much easier now.

So yeah, we're happy.

Now.

This is not to say that the Ping is perfect...

When we opened the box and pulled out the pump, I noticed immediately that the Ping is considerably bigger than Joseph's IR 1200. (Bear in mind, one of the things that drew us to Animas in the first place was the small size of their pump. So this was a surprise.)

Also, I was looking forward to Joseph having the food database in the pump.

You see, shortly after we purchased his IR 1200 four years ago, Animas released the IR 1250--the first of their pumps to include that database.

Sadly, the Ping only has the food database on the meter-- which seems kind of nutty (at least for us) as we don't send the Ping's expensive, somewhat large meter to school with Joseph (where I think he'd most benefit from having access to that food database).

Ah well.

In other news, Evan lost her first tooth!

AND I got a job!

Which is part of the reason I've been MIA.

It's part time (20-30 hours a week) extremely flexible-- and dang cool.

I'll tell you more about it soon.

One last thing.

Joseph is just shy of my height and closing fast... which is sort of freaking me out.

An Early Present

Here we are coming to the end of the year, and what have I been doing?

Stressing about money.

Money for our property taxes, money for Joseph's orthodontia, miscellaneous medical bills, our insurance premiums, CHRISTMAS...

Money for a new insulin pump.

That's right, Joseph's current pump will soon be out of warranty-- and given our history, there's no way we can afford to be without a warranty. Thus, we have to choose a new pump and purchase it before the end of this month.

After much discussion -- and a brief look at the competition -- we've decided to stay with Animas.

Initially I had some reservations about this decision, but we have gotten excellent customer service and Joseph does indeed love his current pump.

And we're all very much intrigued by the new OneTouch Ping system.

This latest technology from Animas includes a glucose meter that is able to wirelessly communicate with the pump.

You can actually operate the pump from the meter.

What exactly does this mean?

Well, for us it means that when we check Joseph's blood sugar every two hours overnight and have to give him a correction when he's high or decrease his basal insulin when he's low, we won't have to:

• Pull back his blankets;
• Roll him over (if he happens to be lying on his pump case);
• Remove his pump while untangling his tubing (which always seems to be wrapped around the clip on his case);
• Give a bolus or change his basals while keeping one eye on the pump, the other on Joseph (because any sudden move can easily rip out his infusion set);
• Maneuver the pump back into it's case as Joseph flails about in his sleep and then rolls once again on top of said case.

Nope, we won't have to do any of the above.

Rock. On.

Ahhh, but there's more...

No, not about the Ping-- but rather, about paying for the Ping.

While we have insurance and have met our deductible for the year, unfortunately, we're still left with a 10% coinsurance payment.

Something like $660.

Uh huh, this is where the stress part comes in.

Or maybe not.

I got a call last Wednesday afternoon from Animas.

"Sandra, we're still waiting for prior authorization from your insurance company, however, we were able to verify your benefits. It looks like you have a 100% benefit."

"Excuse me?"

"A 100% benefit."

"Really?... Seriously?"

"Yes, you see- "

"But wait-- how can that be? Our insurance covers 90% once our deductible is met. I don't understand."

"Well, it looks like you've also met your family's annual out-of-pocket maximum."

"Holy Cripes! Then you are serious."

And now I'm up out of my chair.

"You've just given us an early Christmas present, you know that? This is AWESOME!!!"

The minute I hang up the phone, I'm punching in another number.

"Ryan? Honey, we're getting the Ping for Joseph-- and it's not gonna cost a thing! Can you believe it?!"

I still can't.

The Silver Lining

Sorry for the long silence.

There's so much to tell, but -- with the kids out of school for the summer -- so little time to tell it.

I'll do my darndest to post more as soon as I can.

In the meantime, here's something that happened just today...

------------------------------------------------------------------------------------

4:35 in the morning.

Bleary eyed, Ryan sits on the floor holding Joseph's pump.

And for just a few seconds, the only sounds in the room are our son's endearing snores-- and his pump's not-at-all endearing alarm.

"Call for service," Ryan says quietly, while squinting down at the pump's display. "I just pop out the battery, right?"

"And we've got to rewind and prime it," I remind him.

He disconnects the pump from Joseph's hip, then slowly gets up and leaves the room in search of a coin to unscrew the battery cap.

A moment later, he sits down next to me on the edge of the bed.

As Ryan pops the battery out, counts to three, then puts it back in-- I remember something.

"Wait a minute," I say, "we had one of these alarms not long ago. And the last time I called Animas about an alarm, they said we should be concerned if we see two or more in... I think they said 30 days. Let me look at the history."

Ryan hands me the pump.

I go to the main menu, push "History" and then "Alarm."

Two additional "Call for Service" alarms are there-- on May 1st and the 25th.

Damn.

I get back to the main menu, go to "prime/rewind," pull out the pump's cartridge, press rewind, and listen to the piston rod whir down...

A couple of minutes later, my still snoring son is reconnected to his insulin pump.

And I'm back in bed, unable to sleep.

At 8am, I'm on the phone.

Unfortunately -- because it's Sunday -- I get an answering service.

A woman tells me that someone will call back soon.

Sitting quietly on the couch -- the phone in one hand, Joseph's log book in the other -- I'm not even angry.

Just exhausted.

Five minutes after leaving a message, I'm calmly sharing our alarm history with an Animas support person.

She listens very carefully, takes down the error message numbers, and then asks:

"What is the serial number on Joseph's pump?"

I tell her.

"We'll get a replacement out to you first thing tomorrow morning-- oh, and what color is his pump?"

"It's black."

"Oh, I'm so sorry-- we always send replacements that are the same color as the original pump, but I'm afraid we're out of black in that model. We only have blue and silver."

"Really-- " I say, and without hesitating:

"We'll take the silver."

And then, I'm smiling.

Because -- despite the fact that we're about to receive our sixth pump in two and a half years -- Joseph is gonna be dang happy about this new silver one.

Another One Bites The Dust

"Mom, I feel low."

"Okay, Bud-- let's see where you're at."

Joseph washes his hands, dries them on a dish towel, and picks up his meter.

A "beep" and then -- 66

"Should I take two, Mom?"

"Yup-- and why don't you just disconnect from your pump. We need to do a set change anyway... "

While I go collect the necessary supplies, Joseph sets his insulin pump on the kitchen counter, pulls up a chair and begins crunching away at two glucose tabs.

Returning to the counter, I press the backlight button to "wake up" the pump, and immediately-- the thing alarms.

Loudly.

Hmmm.

Peering down at the display screen, I see the words "Call for Service" -- along with instructions to "remove the battery to stop the pump alarm."

The pump then begins to vibrate -- almost angrily, it seems -- as if to drive the point home.

Alrighty, then.

The last time we got this error message, an Animas rep told us that the pump will alarm occasionally if it needs to be re-booted due to "a general processing error."

We would only need to be concerned if this happens "two or more times within a 30-day period." (It's been over three months since we last saw this error message.)

So, unfazed, I search through a kitchen drawer for a nickel so that I can unscrew the battery cap.

I pop the battery out, then back in.

The remainder of the set change goes off without a hitch.

Despite this fact, I decide to call Animas-- I mean, the pump did say "Call for Service."

As I grab our cordless phone and head downstairs, Ryan mentions that the buttons on the pump seem "a little less responsive lately"-- that you have to press them more than once sometimes when you unlock it.

Whoa.

Moving back up the stairs, I call out:

"Hey, Joseph-- have you noticed anything funky about the buttons on your pump?"

"Well, sometimes they kind of hesitate when I'm unlocking it."

I dial Animas.

Immediately after describing the alarm and error message, a pump support person instructs me to re-boot.

I tell her that I've already done so and all appears well -- but then I describe Ryan and Joseph's problem with the buttons.

"Is the rubber that covers the buttons coming away at all?" she asks.

"I don't think so-- let me go check."

I run back upstairs, look over the front of Joseph's pump, and tell her: "Nope, it looks fine."

And then as we're talking, something dawns on me (and on the pump support rep as well). With my hand over the phone, I call out:

"Hey, Ryan, Joseph-- are you pushing the buttons to unlock the pump, and then finding that you have to push them a second time before it unlocks? Is that what's going on?

"Yeeess," they respond.

"Okay. You guys need to wake up the pump first -- by pushing a button -- and then unlock it. That's why it seems like it's hesitating. It's a two-step thing."

"Oh." they both say, smiling sheepishly.

I then return to the patiently-waiting pump support person and -- feeling a bit sheepish myself -- tell her that "it seems my boys just forgot the pump wake-up procedure."

So we're all good.

Until later-- when Joseph pulls his pump out of its case to see how much insulin he has on board.

"Mom, look at this!" he says, looking stunned as he holds his pump out to me.

Oh. My. God.

The rubber over the backlight button at the top of his pump is pulling away.

(Clearly, my earlier examination of the pump's rubbery surfaces was less than thorough. )



For when he flips the pump over, and touches the rubber area just below the buttons, we discover that this too is no longer attached.

At. All.


You've got to be kidding.

When I call Animas back, I'm told that while Joseph's pump is still functional, it's no longer waterproof -- and that a new pump will arrive by noon the next day.

The following morning -- before I finish my second cup of coffee, a package arrives.

Joseph's fifth insulin pump.

Am I upset? Are we freaking out about this?

No. Not really.

Yes, needing yet another replacement pump is disconcerting-- but considering that our very active eleven-year-old child wears this thing 24/7, it would be surprising if nothing ever went wrong with this device.

And this last pump worked beautifully for over a year (a much better track record than its three predecessors).

We've got two years left before insurance will cover a new pump, and as it stands now, Joseph wants to stay with Animas (he really loves this pump).

Quite frankly, I like it too-- and with one exception, the service we've gotten from this company has been stellar.

But still.

Five pumps in two years.

I guess we're just gonna have to see what the next two years bring.

(And fingers crossed, it won't be yet another pump.)

Okay, So It's All Good

All right. This is the first time I've had an opportunity to update you all on our situation.

(It's been really, really busy over here; Evan's been sick -- again -- poor kid, and Blogger has given me grief each time I've tried to post! Grrrr.)

So, while waiting for a call back from Animas, I spent all of Wednesday fuming-- getting more riled with each passing hour.

Oh yes, I was itchin' for a fight.

Well, folks-- I never got one.

In fact, the people at Animas reminded me yet again why I was so very glad Joseph had chosen their pump in the first place.



Wednesday night, I got a call back from a very apologetic Pump Support Manager. It seems that the person who sent me the offending email had forwarded my voice message (and a rather stern email I'd sent to her) to the Pump Support Manager-- who had been out of the office all day (thus the after-hours call back).

Anyhow, she explained that the email I'd received was the result of periodic audits done on "outstanding" product.

That in essence, I'd gotten a form letter.

"This is more than a little upsetting," I explained, "given the reason we had the loaner pump in the first place."

"Yes, I understand completely," she said. "My son wears an insulin pump-- I'd be very angry, too."

We went on to discuss details of our previous pump failures, and how well Joseph's current pump has been working.

"Well, it does sound like you have more confidence in your son's current insulin pump," she said, "but still, why don't we have you hold onto that loaner until 2007?

We'll just call you back after the first of the year and see how you're feeling then-- that way you can get through the holidays with no worries."

And that was it.

Oh wait, there's more...

I got a second call yesterday afternoon from Animas-- following up on my request for information about our last pump failure (I never did find out if the priming problems we'd had were just us or the pump). Seems it had been a malfunction-- an "intermittent connection" problem.

So, once again-- it's all good.

Animas (aka Johnson & Johnson) Plays Hardball

Last night-- the first time I had a chance to check email since coming back from a weekend away (another post coming on that), I found this in my mailbox:

Dear Mrs. Miller:

Our records indicate that Animas shipped you a pump on 09/08/2005. As per our correspondence, you were to return the pump, serial # 14-23604-10. As of today, 10/16/06, we have not received this pump.

As outlined in the return instructions sheet sent with the pump, you are responsible for returning the pump. If we do not receive the pump within the next 10 days, you will be billed for the cost of the pump.

If you have any questions regarding the return of the pump or need assistance, please call Pump Support at 877-767-7373, extension ____. Thank you for your prompt attention to this matter.

Thank you,

J_____________

RGA Coordinator

Animas Corporation

a Johnson & Johnson Company

1 877 767 7373 Ext. ___

Hmmm.

First, I have never received any correspondence regarding our loaner pump. This note makes it sound as if they've been hounding me for months.

Second, the reason we have a loaner pump at all is because one of their pump support people left us high and dry going into a Labor Day weekend last year-- refusing to replace Joseph's pump, but promising us a loaner that Friday because we'd been having problems.

But then never sending us one.

By the end of that weekend, Joseph's pump was no longer functioning.

(This would be our second pump failure since Joseph began pumping the previous January.)

Soon after, we received two pumps-- Joseph's third in seven months, and then a loaner pump for backup.

And finally (can you hear my voice rising?), I've not heard from Animas on this since last December when a pump support rep called to see if we were ready to return the loaner, but then (given our past problems) agreed to let us keep it for two more months. By February, we were glad to have the backup pump-- Joseph wore the thing for two days while we awaited delivery of his fourth insulin pump.

His fourth pump in eleven months.

Right now, while waiting for this woman to return my call, I'm so angry I could spit.

A phone call, letter, or email, simply requesting return of the pump -- acknowledging why we had the loaner in the first place, and that things seem to be going well with Joseph's current pump (which is true-- we haven't had a problem in almost eight months) -- would have been entirely appropriate.

But this?

The Color of Progress

About two months, ago I received a call from an Animas Pump Support Rep. He was wondering if we could return our back-up insulin pump.

Typically, "loaners" are provided if the user will be traveling out of the country.

Or, if someone's mother is at the end of her rope because her son is on his third pump in seven months.

"Could we just hang on to it for one more month?" I asked him, "This may sound superstitious, but if we could get past that four-month mark... the time when we always seem to have trouble, I'd feel a whole lot better."

Well, this rep-- understanding the concept of good customer service-- granted my request. In fact, he said we could hang on to the loaner for two more months, if that would make us feel more confident.

Good thing, too.

Joseph's numbers were pretty funky all day yesterday. He had a persistent low at school-- the kind that adamantly resists treatment. It took almost 40 minutes and a whole lot of glucose tabs to bring him up from 60 to 82.

He was high the rest of the afternoon, despite corrections.

Last night, Joseph was due for an infusion set change-- I had hoped this might help alleviate some of these wild fluctuations...

But all it would yield was more trouble.

You see, when I came to the "prime tubing" step of this set change, each time I held down the "prime" button, the pump stalled.

On the third attempt the pump froze completely, displaying an error code and a message that read "Call For Service."

This might be a good time to mention the phone message I'd received earlier in the day from my friendly Pump Support Rep. It seems our two-month extension was up and it was time to send back that loaner pump.

Uh huh.

So last night, while holding the ceased-up pump in my hands, in a state of near shock at the realization that this was our THIRD pump malfunction-- I called for Service.

After I recited the error code on the pump's display, a very calm Service Rep explained that "because the pump is always doing self-checks, it occasionally needs to be re-booted. Just take out the battery, put it back in, and do a full rewind."

"But what about the stalled primes? And we've had some funky blood sugars today. Should I be concerned that the pump might not be working properly?"

I asked these questions, hoping for some serious reassurances.

And in a very serious tone, the Service Rep responded.

"Don't put the pump back on him. Sandra, we'd rather be safe here. We'll send out a new pump right away."

Pump Number Four is en route.

We completed the set change using the silver loaner pump (all three of Joseph's pumps have been black, so this was quite the novelty for him).

"Mom, this pump looks so new," he said as he turned it over in his hands, "And I like the silver... it looks just like a cell phone."

At about 10:30 pm, Joseph's blood sugar was 143, and he was finally off to bed.

By 12:30 he was 241.

Two hours and one correction later, he was 289.

Two-and-a-half hours and a second more aggressive correction later, Joseph's blood sugar was 324.

No. Way.

Ryan, who'd been doing these overnight checks, wisely gave Joseph a MUCH more aggressive correction via syringe.

Within two hours Joseph's sugar dropped to 187. Less than 30 minutes after that (at breakfast) he was 138.

The very first thing I did this morning was change his infusion set.

As he pulled out the old set, we all noticed that the cannula was bent completely to one side. In fact, the cannula looked as if it had never even entered his skin.

Another horrifying realization... from 10pm until 5am, my son had likely received no insulin.

Thus it was no surprise that just before leaving for the bus stop he said, "mom, I'm feelin' a little nauseous."

A left hook, right to the gut.

"Honey, do you think you could pee real quick before you go... just so we can check for ketones?"

He's had ketones only once before, and they were trace; he'd never even had them at diagnosis.

But he had them today.

Almost immediately after dipping that ketone stick, it turned a deep shade of pink.

Small ketones.

"Let's have you drink a large glass of water before you go, and I'm gonna kick up your basal rate for a couple of hours." (We'd been conservative with his breakfast bolus because he was coming down so fast... )

After he left, I called the school nurse to give her the heads up on what was going on. To make sure that at the slightest sign of trouble, they would check for ketones... and call me.

So far so good. His sugars were in the low 130s at snack and right before lunch.

And he sounds good.

But man...

In the meantime, I keep thinking back to something Joseph said this morning, right after breakfast:

"Mom, Dad, I want to upgrade soon to the 1250, and this time I want a silver pump. "

He paused a moment, looking thoughtfully at the loaner pump in his hands.

"Because, you know... " he said, looking up at us with an absolutely earnest expression.

"Silver is the color of progress."

Resolution

All right. So when last I posted, we were waiting for Joseph's replacement insulin pump.

By eleven o’clock yesterday morning I was starting to panic, thinking "maybe this will be like the loaner . . . maybe it just won't come . . . "

I called Animas.

And again I explained the events of the past two weeks, adding that I was "losing confidence in the pump and the company we had chosen."

Now, to be fair, the technical support rep with whom I spoke was incredibly thorough. She walked through each of the issues I had raised last Friday, troubleshooting in an attempt to find an explanation for all of them.

All this, as I was rapidly losing my composure.

"This is insane! Our THIRD pump in seven months! They're supposed to last four years. These aren't even making it to four months!"

Understand, that because I had no replacement pump in hand, and Joseph was wearing something that could fail at any moment, I was a little out of control.

Finally, after offering many apologies and reassurances, the Animas rep said she'd call UPS, and get right back to me. Her professional response was typical of all previous conversations I'd had with Animas.

Well, prior to last Friday, that is.

Five minutes after I hung up the phone, the pump arrived.

Joseph was hooked up to the new pump, with a new set at 4pm (he didn't want me to come to the school and do it, and since I had pump in hand and could get to him in minutes, I felt okay waiting til after school . . . though I did pick him up instead of letting him take the bus).

And as if to give us one parting shot, the old pump sounded the "No Prime" warning once again as it sat on the counter top while we changed Joseph's set.

Joseph looked at the broken pump, with it's beckoning alarm and it's horribly faded display, and said, unsympathetically, "Stupid pump."

Like his pancreas, and the pump before this one . . . just another betrayal, I guess.

But then, he asked if we could put the cartridge cap from the old pump onto the new one.

"Why?" I asked, a bit surprised.

"Then I'll still have a part of that one with me. Then I won't miss it."

Oh.

After we finished, he got up quickly and took off outside to skateboard with his buddy, Zachary-- only to return inside about 45 minutes later, looking frustrated.

"Mom, this pump just gave me a "Warning No Prime" message.

What?

"Okay then, let's have a look at it," I said as calmly as I could. "Yup, we sure did just prime it 45 minutes ago . . . hmmm . . . all right, let's just re-prime then." So I primed out two measly units, because, as I said, I JUST PRIMED THE DAMN THING 45 MINUTES AGO.

"Is this pump going to work, mom?” Joseph asked, tentatively.

"It's gonna be just fine, buddy. Hey, did it fall out of your pocket at all? Or did ya bump anything? " I asked these questions, wondering skeptically about a "hiccup."

"Nope. Not at all. Can I just go outside now?"

Okay then. Not a good time to phone Animas, since Evan had cried throughout our little re-priming session. She was begging me to take her outside too, so I resolved to call Animas after Ryan got home.

I didn't have to.

Our local pump trainer, a CDE, called to follow up on our situation. We discussed everything that had happened. She apologized up and down, and explained that this is not typical of their pumps or their service. I reiterated to her that the two areas I felt were Animas' strongest -- stellar support and well-made hardware -- were failing.

"Sandra, listen, if anything happens overnight or tomorrow morning with Joseph's pump, call my cell phone. I will come out [she's an hour away] and loan you my demo pump until a replacement is sent. As a matter of fact, if Joseph has any problems at all, ever, with this pump, call me. I don't want you to have to wait around for a replacement."

This morning I received yet another phone call from Animas. It was from the rep I'd spoken with yesterday from the home office.

"Sandra, I got a call from your local pump trainer this morning. You've experienced an unacceptable number of problems here. We're going to send a loaner pump for you to have as a back up over the next three months. We'll review at the end of that period to see if you need it longer. The problems you've had are truly not typical of our pumps. But we don't want you to lose peace of mind worrying about whether or not this new pump is going to fail. "

So that's it. And I'm back to feeling much better about our pump company-- if maybe a little less confident in our pump.

Insulin Pump Woes

Just before Joseph left school on Friday, his blood sugar was 118. In the 45 minutes he sat on the bus, and the five minutes it took for him to walk the half block from the stop to our house, his blood sugar dropped 81 points-- to 37.

Of course, we did not discover this fact immediately.

"Mom!" Joseph called out as he walked in the door. "My pump alarm went off twice on the way home from the bus stop. It said ‘Warning, No Prime.’"

"Okay, let's take a look."

"Oh, and mom, I think I might be a little low."

While Joseph washed his hands and prepped the meter, I looked over his pump. According to the history menu, we had primed it the previous night (when we changed his set). Okay then. To be on the safe side, I re-primed. When I turned to give Joseph his pump, a beep sounded from his meter indicating that his sugar had been tested.

"Wow . . . I guess I'm really low."

So, what is it with 37? We've seen this number three times lately (in and among some 40s and 50s). It's like, if he's gonna go way low, it's gonna be a 37.

I don't know.

Anyhow, we treated the low, and Joseph was back up in 15 minutes.

Needless to say, the thought of him walking home alone at 37 was more than a little frightening.

Something else bothered me too. Something that's been needling at me for two weeks. On August 19th, when we'd gone through airport security in Spokane, a security person had actually tried, too late, to prevent Joseph from passing through the security screen. Strangely, he said it was "for his own protection." That's never happened when we've flown before.

Since that day, Joseph has had many precipitous blood sugar drops, despite pulling back his insulin to pre-vacation levels. I had assumed the lows were due to the honeymoon factor-- that his pancreas was simply spitting out higher levels of insulin. But maybe I was wrong.

You see, for one day, our first day back from vacation, the pump recorded Joseph's bolus and basal doses in the previous day's history. In other words, for one day, it experienced an odd malfunction. After I reset the date and time, it worked fine, but still . . .

So, because I was feeling upset, and fearful that his pump might not be functioning properly, I called Animas. After explaining the above to a pump support person, she said, "I can really sympathize with your concerns, but it sounds like the pump experienced what I like to call a 'hiccup.' If it was bumped or dropped, sometimes it loses its prime, and just needs to be re-primed. "

A hiccup. Hmmmm.

"You know I think I'd feel more reassured if we were just talking about a toaster. But we're not. This is my son. And this is his insulin pump."

"Yes, I know. And I understand. But they're really picky about the reasons for sending out a new pump. This really isn't a good enough reason."

"Okay then, " I said curtly, as the anger that had been churning in my stomach finally reached the boiling point, "what is your name?" And then rapidly, "Because I just want to make sure I know with whom I've spoken, in case we need to follow up here. In case there's a problem."

After giving me her name, "um . . . well you know, I was just thinking . . . that um, we might want to do this. Well, it's not something we normally do, but it might be a good idea here. I can send you a loaner pump so that you're not without a backup over the long holiday weekend . . . "

The loaner pump never came.

Fast forward to this morning. I went downstairs to make Joseph his lunch for school, and to go over his overnight sugars with Ryan. As I walked in the kitchen, Ryan was there waiting. And he did not look happy.

"Joseph's pump display is fading," he said, in a defeated tone.

I sat down.

"What?!"

"The left side of the display is gone. I don't know if what's left will make it through the day. He can see enough of the screen to do boluses, but I don't know for how long . . . "

Violently, I grabbed the phone.

Joseph's new insulin pump – his third in seven months – will be here tomorrow.

Parents of Prospective Pumpers

Try saying that three times fast.

So, upon waking this morning I found a number of wonderful, encouraging comments in response to last night's post. Thanks guys. I feel better already. I wish I could say the same for Joseph-- his fever is up again. But we kept his sugar from going completely nuts last night-- just one spike to 257, that was stopped in its tracks with an aggressive correction. He stayed in the low 100's the remainder of the night, then dropped to 79 at 5am. Okaaay. We nudged his basal rate up a bit, and he was back in those low 100's...

It's a dance. And we're getting a lot better at it.

Now, this morning I also discovered a comment to a previous post, He Found Out, from another fairly new blogger-- Type1Dad. As per usual, I was going to respond to his response in a comment. But then I realized that his request for information about how we began prepping for the pump might also be of interest to others who were looking for the same.

Soooo..... here's the deal:

Yes, we did put in quite a bit of time in preparation for the pump. One of the first and best things I did was to subscribe to Insulin-pumpers.org (see my very first link). These people are amazing. "Pumpers," as I like to call them, are an online community of pumpers AND parents of pumpers. There are almost 5,000* folks currently subscribed to this group. And I cannot say enough about the wealth of information and support they provide. Even if you're shy about posting, just following the threads will provide a ton of info. I was one who posted looking for answers, especially before we settled on a pump for Joseph. These people gave me an inside look at the various pumps out there, helped me articulate the important questions for our care team, and really just got us through the whole saline trial period.

It costs nothing to join, but they do have fundraising drives. I always contribute, because I think the work they do-- bringing people together who might otherwise have never connected -- is invaluable.

Moving on...

I also read several books about the subject. If you haven't read them already, start with:

Insulin Pump Therapy Demystified by Gabrielle Kaplan-Mayer

Initially, I looked at others (and actually starting reading Pumping Insulin-- see below), but found that reading this book cover-to-cover first was the best way to get my "feet wet" with the whole idea of pumping.

Next, I read:

Smart Pumping by Howard Wolpert

This is my favorite book on pumping. The writing is so well done, so accessible. It doesn't read like a text book-- more like having someone, a very personable someone, sitting there with you, explaining the basics. In fact, using this book, I was actually able to determine Joseph's starting basal rate, insulin-to-carb ratios and sensitivity factor before we even got the pump. And they matched the ones set by our CDE!

And finally, I read (and still consult):

Pumping Insulin by John Walsh

A fantastic resource, but very intimidating if you haven't read the previous two first. John Walsh is considered by many in "pumping" circles as the "guru" of insulin pumping. This book certainly bears that out. His website is also a terrific place to visit for comprehensive articles on the subject, an extremely useful pump comparison table, or just to buy books and other diabetic supplies.

The last component here, and it was really the first, most important, and an on-going one, was to spend time talking with Joseph about the idea of pumping-- exposing him as much as possible, without overwhelming him (which can be really hard, I know) to the whole concept. Then we did saline trials with three different pumps. The first trial was with a Minimed at a terrific ADA camp in October for newly-diagnosed families. I actually wore a Paradigm pump along with Joseph. Quite frankly, there was no way I was going to even consider having my son wear a pump without knowing first hand if it would hurt him. (BTW, it didn't hurt.) Next up, Joseph tried the Cozmo and Animas pumps in December.

Now, at times, Joseph did express some resistence to the idea of wearing a pump, but I believe that having faith that this device would be the best choice for him, and conveying that faith in every conversation about it, was key. After all, if he was not on board with this, there's no way it would work. And we would have certainly delayed putting him on an insulin pump if that were the case. Happily, it was not.

After thoroughly researching all of these pumps (and finding pros and cons with all three), and to further strengthen Joseph's commitment to such an important step, I decided to let him make the final choice. After all, he was the one who would have to wear it. 24/7.

Joseph chose the Animas 1200 . It was the smallest, lightest pump available. And extremely user-friendly. He loved it from the moment he started using it with saline. And, (for mom!) it had the lowest basal rate increment-- .025 units/hour. Because Joseph was (and still, apparently, is) honeymooning, this was an excellent choice. We are now back to running a .025 basal from 10 am to 8pm.

As a result of all of the above, we went into our training with confidence. We'd received our pump almost a month before the training actually took place, so we had some time to play with it a bit. Joseph and I had also messed with the virtual pump on Animas' website, so we were pretty comfortable with the real thing. At our training session, we came in with Joseph's pump loaded with a battery and already programmed. Ryan, Joseph and I had worked with the training DVD, practiced filling the cartridge (with saline, of course), loading it into the pump, and priming. The only thing that made me nervous was inserting the cannula-- but, I think anytime you have to stick something into your child, you're gonna be a bit shaky. Thank heavens we took to that quickly as well.

I won't lie, we've had some scary moments since Joseph started pumping. Just read some of my previous posts. But despite this, he still says that he will "never go back to shots."

There you have it. Sorry for the incredible length, but the process of choosing an insulin pump and learning how to use it-- of becoming emotionally ready to take this step-- can be daunting. Hopefully, this post gives you some guidance along the way.

If you have any other questions, just ask.

* this is a correction-- originally I posted that there were (only!) around 500 subscribers-- this is actually the number of subscribers to the parents-of-pumpers list alone.

Pump Failure

Okay, so last night I’m getting Joseph ready for bed– checking his blood sugar, and then checking his basal setting on his pump. It’s 10 o’clock. I know, I know, kind of late for a kid who has to go to school in the morning, but he just HAD to see the finale of The Amazing Race. (As did I).

Anyhow, I hit the backlight button on Joseph’s pump to “wake it up,” and the screen lights up. But no display. Nothing. No words. No numbers.
A complete and utter blank.

Now THIS is a problem.

For you see, without a display I have no idea what the pump is doing– I cannot adjust his basal, I cannot give him a bolus.

Initially I thought if I just push the backlight button a few times, the damn thing would wake up. And it worked – sort of. The pump alarm went off, then it began to vibrate so vigorously I thought it was going to jump right out of my hands. This was not good. I stayed calm– primarily because Joseph looked as if he was going to lose it any second. “Mom, what can we do? Why isn’t it working?” he asked while choking back tears. I could understand why. After all, in the less than four months he’d been wearing his pump it had truly become a part of him. A part he could trust– unlike his pancreas.
At that moment I wanted to strike the person who made this pump.

So I said we’ll call Animas – that’s the pump company – and find out what to do next. I put in the call, and received a call back about three minutes later. I was told that Joseph would be sent a replacement pump, however, because it was so late in the evening, we wouldn’t receive the new pump until Thursday morning. Dang! In those few minutes it took for Animas to call back, I’d had the irrational fantasy that they’d put a pump on a truck that evening, and we’d wake up to find it on our doorstep in the morning....

Next call– “pediatric diabetes physician on call.” Again, the call back was quick. We were to put Joseph back on shots (obviously) until the new pump arrived. Happily we had a nice stash of Lantus in the fridge for just such an occasion. I’d always hoped it would just sit there, gathering dust, like an insurance policy untainted by a claim. Oh well.

Joseph was NOT pleased with the whole shot thing. Neither was I. But pulling out a vial, pushing in air, then drawing insulin into a syringe. Trying to find a fleshy part on the back of his arm, then pinching up the skin. Holding the syringe like a dart and poking it in quickly, pushing the back of it – in and out, just like that.
Like riding a bike. You never do forget.

Though we all look forward to the arrival of his new pump, I must say this incident has me more than a little shaken. We are so dependent on this device. Losing the display was bad-- very bad. But what if the malfunction had caused something more than a terrible inconvenience? What if insulin delivery had been affected? You can go crazy thinking about these kinds of scenarios. About our child’s vulnerability while wearing this device.

But we have no choice really. A pump will give him the best glucose control. And, if we want to give him the best odds for a complication-free future, then we must trust ourselves and the technology we’ve chosen to help ensure he has that future.