It's on it's way....

   We got the call last night.  The nice lady from Medtronics Canada called to let us know that Jonathan's shiny new pump was being shipped.  Odds are it's half way to Memphis by now.  I still find it silly that to get from Toronto to Windsor (400Km / 240mi) that it goes to Memphis first... silly FedEx...

   It's weird.  I was so reluctant to go pump just months ago, and now I find myself waking up in the middle of the night like it's Christmas eve.  Jonathan is excited too.  I don't think he fully understands all of the implications here, but he seems to be clear on one thing trade 12 needles for 1.  By the time he goes on the pump, he will have had well over 1500 shots, probably closer to 1600 or 1700.  Fast forward to September 2011... 122 infusion sets (maybe a few extra, nothing's perfect).  And when I need to give him 2.7 units of insulin, I can, I don't have to add extra food to get to 3.0 or short him 0.2.

   I'll admit it. I am scared about having to put the words kink and cannula is the same phrase.  I'm concerned about DKA and giving up long acting insulin, but on the other hand, he usually doesn't go more than 6 hours between tests (that's lunch to dinner) and we can add one in there!

   I'm not looking forward to the first couple of insertions and the first time we hit a vein.  But I am looking forward to taking him to Sunday brunch and not caring that the next meal may be a couple hours away.  I'm looking forward to letting hip sleep on Saturday morning instead of rushing him to the breakfast table because I know he has to eat lunch by 11:30 so we can get his sister to gymnastics.

   I'm not going to jinx it by publishing the reason there haven't been many D posts recently... but I'm sure we'll be talking a lot about Mi-me (maybe Jonathan can come up with a better one) in the coming weeks.

Am I not as afraid as I sould be?

The question crossed my mind the other day and it struck me as odd that I'm not as afraid of this as maybe I ought to be.

 

A good portion of my friends, co-workers, and people that I interact with every day have children.  Even a large chunk of those without children of their own have a niece or nephew that they are close to.  Inevitably, at some point or another, the topic of diabetes comes up.  Maybe because it has such a prominent place in our lives, maybe it's because I love telling anyone who will listen so that word gets around and hopefully that leads to support of groups like JDRF, or maybe it's both.  When you tall a parent who knows little to nothing about Type 1 Diabetes what can happen if it's not properly managed and they realize a potential result is every parents worst nightmare - the look on their faces is sometimes staggering.

 

This morning I was having a conversation with a mother that garnered such a reaction that I was taken aback and realized that maybe I don't "fear" diabetes as much as I should.  I know very well what can happen if blood sugars are left to run high long-term; and what can happen if they dip too low.  Catching Jonathan at 2.8s (50) and 3.2s (58) a few times over the past weeks (even at 2 hours post injection when he still has active insulin), I know he was potentially headed towards a dangerous level.  I even shocked myself last Saturday when I testing Jonathan out of suspicion and found one of those 2.8s, calmly walked in the house, grabbed a cup of juice and gave it to him without even thinking about what had to be done, just doing it.

 

Then it hit me.  As weird as I feel about not being afraid, I have to think that it's likely because I've spent the last almost-eleven months living with this, that I've tried to read and learn as much as I possibly can, because I have open and frank conversations with medical professionals, parents and others with the disease, and that we have a fairly good handle on things with Jonathan in terms of monitoring and managing.  I would by no means profess to be even remotely an expert, but I do feel that I know my enemy and I have a healthy respect for it.  That being said, I don't want to come of sounding cocky, my confidence is never 100%, but it's not non-existent.

 

My wife has concluded that I have OCD.  I really don't think that I'm obsessive about diabetes, but I am always watching, testing, and calculating (carbs and plans).  I would have to say that diabetes pops into my head more than sex, beer and tv combined.  Despite my wife's diagnosis, I think I have to sum it up that I traded fear for knowledge and involvement.  I'll admit, I'm a bit of a control freak too, so that probably factors in as well.

 

What do I do when things get tense?  I burn through test strips like they were free (I love Green Shield for that one).  I had a co-worker recently surpried to learn that I'm not an insomniac, some nights I get up every hour to check blood sugar.  A double-digit test day is not unheard of.  One of the ironies is, Jonathan's best nights are often my worst nights.  On more than on occasion he has been about 5.5-6.0 (99-108) straight through the night, which is great for him, but without knowing what is little body is going to do next I can't let hours pass and hope he doesn't drop 4 points in a couple hours.  Maybe a CGM would help, but then again I would probably lay there just waiting for the alarm (besides - not covered.... Damn Green Shield).

 

As I ramble on here I realize that some may argue it's really fear that compels me to do what I do.  I guess I don't really know; six of one, half dozen of the other?  What I do know though is that compared to the trembling puddle I was less than a year ago, I feel that I'm on more solid ground now.  Of course there are bad days, and there will almost certainly be days worse than anything we've seen yet to come, but not cowering in a corner has made a huge difference.  Our clinic, our friends, our JDRF community and the access I've been afforded to the inner working of that organization have all made such a huge impact in my life and in turn in Jonathans.  If I had one piece of advice for any newly diagnosed person or family it would be this: learn, learn lots.

 

Jonathan and his sister as our real top prioirties in life so it goes without question that whatever needs to be done is done.  Even if it means I look like crap in the morning, I really don't care, so long as he gets to stay on top of the world.  Maybe somewhere in here I answered my own question.  Maybe I'm so deep in there there's just no time for fear, maybe that's it.  Whatever it is, and even if I never answer that question, so long as we can keep racking up small victories I'll be happy.

Weapon of Choice

    What can I say?  I called it wrong.  A week ago I was ready to jump all over one pump system and run with it.

    By the advice of our CDEs and my own conscience, we invited two of the three reps to spend some time with us and review their particular products.  As it turned out, the number I had for the Accu-Check rep had two digits reversed.  I looked on-line at the Spirit and was not at all impressed after seeing what Animas and Medtronic had to offer.  No disrespect to Roche, but it just seems to be a very out dated system and not user friendly (which was the number one complaint I found on user groups).  And with that it came down to one decision: Ping or Paradigm.  What made the final decision so tough for us is that both systems are so great.  They both fulfill the basic functions of an insulin pump.  They are both popular and have established track records.  And... they both have advantages over the other.

    After meeting with the two reps and doing hours of internet and soul searching, we finally picked our new weapon in Jonathan's fight: Medtronic Paradigm 522

    So, why did I change my tune?  Why did I go for the pump that he can't wear swimming?  Why did I go for the pump that I'm going to have to dig for to bolus in the middle of the night?  Why did I opt out of the pretty colour screen?  Why did I walk away from all the neat things that Ping can do?  In a word... Perspective.  I guess you could say I had a paradigm shift.

    I gave up waterproof.  Medtronic used to promote their pumps as waterproof.  The 511 and 512 models developed stress cracks over time, many of which were not easily visible and went un-noticed.  Some of the pumps took on water and shut down.  Even Animas pump casings have been known to crack.  Animas has reinforced some areas of their pump that were prone to cracking, but is it a 100% guarantee that water will never get in? No.  The guarantee is, that if water does affect them the company will replace it.  Also, while wearing the pump, you may be able to lounge in the pool, or lake (God forbid your $7000 pump fall off in the lake!), or maybe even do laps.... Jonathan likes to do cannon-balls, one after another....  I just don't think that's great for any pump - besides, with the way he goes, we'd probably have to suspend basil anyway.

    I gave up remote.  The Ping remote does two big jobs that the Contour Link doesn't: 1) Has the Calorie King (after a year though we know Jonathan's diet inside and out and what we can't get off a package we probably have to weigh on his dietary scale anyway.  2) It controls the pump, the same way the key pad on the pump does.  The only time that the remote control bolus would come in really handy is in the middle of the night which at present we bolus on average about once a week (some weeks more, some weeks none).  Another reason I gave up the remote is you only get one, and only one can be linked to the pump, which means to use it when we're not with him is to give it to him (at $250 each to replace), while the Medtronic can accept BGs from multiple remotes, we get three to start, and if we need another it's only $60.

    I gave up smaller increments.  This was a tough one for me to gauge and I really needed the clinic's help in determining this capability's importance to Jonathan.  Does he really need 0.05 increments for bolus and 0.025 increments for basil?  Animas' increments are half of Medtronic's.  The wonderful ladies at the clinic went to great lengths throughout this process to ensure they did not sway our decision, and their answer to this question was no exception: "We have children over the age of 3 on the Medtronic insulin pump -- and have not had a problem up to now needing to have the .025 unit shifts in basal.  Our little ones under 3 have chosen Animas for this feature."  A respectably impartial statement if I do say so myself, as well as in line with at least one very experienced family.

    What did I get in return?  Well, I got three linkable meters to replace the meters currently at home, school, and latchkey (hmmmm 3 for 3... that was a nice coincidence).  Also, I got CGM capable.  We had initially dismissed the CGM because we can't get it covered and the sensors are $50 for 3 days (although we know some stretch that to 6).  While the transmitter is OMG expensive ($700), we can get a loaner from the clinic from time to time when we need to get a better look inside Jonathan to help straighten things out, and Medtronic also has deals occasionally where you can get a pack of 8 sensors and a transmitter for $500 and they will send you the sensors as you need them.

    Beyond the meters and ability to CGM on and off at will (I would full time if it was covered or we win the $50 million in tonight's lotto), we got a few bonuses that didn't really factor in to the decision but did sweeten the deal.  1) Medtronic has (at least here) an automated supply service... I fill out a standing order form (that I can change when necessary) and they ship us product every three months (which is also the frequency of the government coverage checks).  I also ordered an extra months supply right up front because I want to always be at least 3 weeks ahead.  2) As much as this shouldn't be about the money, the supplies were more cost competitive.  One other bonus that factored in was that of COT (Continuation of Therapy).  The government only shells out for a replacement pump after 5 years.... manufacturers warranties are 4 years (go figure)... Animas offered a $500 extended warranty program... Medtronic supplies a "loaner" if there is a failure in the 5th year to carry Jonathan through.

    The other thing I should touch upon is the software.  Both pumps are capable of downloading their memories onto a computer (Animas even supports Mac - but we don't have one).  The huge difference for us and the team though is that Animas' system generates a PDF file of numbers and basic graphs where as Medtronic's is a web based system that allows for a far more analytical review of the data as well as access by anyone you want to give it to.  Animas is "getting new software" eventually; "it's on it's way".

    Both pumps showed very well and both reps were very knowledgeable about their products and were wonderful to talk with, but in the end the Paradigm just ended up being a better fit.

Pump arrival: First week of August.

Tons of reading and button pushing and going to on-line "Pump School": Rest of August.

Official training and start of saline trials: September 2nd.

PUMP START: September 7th 2010 (Day 374 ADx)