Wednesday, December 22, 2010

Finally, a post released 2 days early


'Twas the night before Christmas, when all through the house,

One creature was stirring, but it wasn’t a mouse.

The children were nestled all snug in their beds,

As I looked and found his hand under head,

I peeled open a finger and with a muted click,

I drew enough blood to fill the test stick.

As I left the room there arose such a clatter,

I ran to the window to see what was the matter.

Up on the rooftop I heard the hooves click,

I knew in an instant it must be St. Nick.

I crept down the stairs and patiently waited,

He saw me there standing and quietly stated,

“Oh my, I wasn’t expecting to see you,

Christmas eve meetings I don’t normally do.”

I smiled at him happily and noticed his sack.

“Santa,” I said “you can take it all back.”

With shock and confusion his mouth opened wide,

His curiosity and wonder he just couldn’t hide.

“Santa, you see, there is only one thing we want this year,

but it does not seem to be a wish you can grant, we fear.”

“Our little boy upstairs dreaming of a fanciful trip,

Lives each precious day in a disease’s tight grip.”

“The gift we really want is to take diabetes away,

But we already know that tonight it will stay.”

Santa lowered his head as he pondered a thought,

He knew too well that this matter has us fraught.

A kind smile on his face and a twinkle in his eye,

He said “There is no wish gander, this I can not deny.”

“Sadly, you are right, there are some deeds I can’t do,

But I leave this for your family and you.”

“A Christmas of joy and family together,

Aside from your wish, nothing could be much better.”

He placed with care his gifts under the tree,

Bid me good night and left fast as could be.

Dawn arrived swiftly and the day was at hand,

Over was the wait the children couldn’t stand.

They cheered as they waited to open their first present,

The moment so perfect, the gift missing I could hardly resent.

The old man was right, my wish not granted indeed,

In stead, for the time, we have what we need.

Blessed by the miracles that gave us this day,

We have too much to celebrate to let D in the way.

I will wait again next year with my wish held steadfast,

That once and for all, diabetes becomes a thing of the past.

Wednesday, December 15, 2010

He's too smart for my own good

   Jonathan's a bright kid (and he better be if he wants to make good on his plans to become a doctor), this was no news to me.  Starting the pump just before he turned 5 I figured we wait a good four to five years before we would start teaching him how to use his pump.  Well... little man had a different plan apparently.  I guess seeing something done three or more times a day, seven days a week, for three months, he was bound to catch on to a thing or two.

   A few weeks back, Jonathan began insisting he could lock his pump himself - and promptly demonstrated the swift button presses to do it.  At first I was a little concerned that he would push any buttons, but knowing how obsessed he is about having his pump locked I thought this would be OK should an occasion arise where he was without us and noticed his pump unlocked.  Content to have him maneuver his tech to a safe place, I let it go for a while.

   Monday night, much to my horror, he unlocked the pump.  "Hmmmmm..." I thought, "this isn't good".  So we had a little talk about who unlocks and who doesn't.  He happily agreed.

   Last night, when it was time for his shower, I was disconnecting him and he proudly told me that he knew how to suspend his pump.  I paused for a moment and then decided I should know if he really could.  I handed him his unlocked pump and S#!T  Click click click - beep.  UH OH!

  While I'm impressed that he picked this up and does it without even seeming to have to think about it, I'm totally horrified that he could suspend it and go hours without insulin... or even worse yet... the unthinkable.... give himself up to 5 units without a single carb to balance it (5 is his current max bolus setting and I don't think he'll be changing that without an insane amount of bad luck).

   And so my dilemma...  Do I start teaching my five year old son how to use his pump properly or put the fear of God into him that if he so much unsnaps the case a holy hell-fire will rain down upon him?  I figure the latter will result in some sort of emotional scaring that will take reams of therapy to correct before he can ever look at the pump again, but the former just doesn't seem right for us at this time either.

   So with some serious thinking and a nice chat with a great friend (who is also a nurse, CDE, and is pretty much the go to gal in the clinic at the hospital) I think I'm going to go somewhere down the middle: there will be Jonathan jobs and Mommy-Daddy-Nurse-Grandma jobs.  Jonathan can keep his hands clean before testing, Jonathan can test and Jonathan can unlock and lock with Mommy or Daddy present.  Mommy-Daddy-Nurse-Grandma are the only ones who can push other buttons, and most importantly - Jonathan NEVER activates insulin (by the way, I know he knows how because he talks grandma through it step-by-step).

   Even giving him a little responsibility with the pump specifically is terrifying.  He could test all day long for all I care (as long as he is at least testing), but to push pump buttons.... I think this is what handing over car keys someday might feel like.  So hopefully, for my sanity, at least a few years of pump drivers ed and then we'll see where we go from there.

Monday, December 6, 2010

One wish

   Aside from publishing this post today being significant in that I squeak in without a full months absence from the DOC scene; it's also a day that I feel I should (to a certain extent) be entitled to get want I want.

   I really only want one thing.  I know I'm not the only one who wants it.  I'm willing to bet that just about everybody reading this wants the same thing.  You could say it would be an ultimate one size fits all.  And if I really wanted to play it up for the holiday season, I could say that it's not even really for me at all - but still, it's what I really want today.

   Amongst all of the things that I have learned in the past fifteen months and change, I've re-learned and probably to a finer degree, what I really need... the things in my life that are really important to me.  I guess when you have a child (or children) whose lives are at risk every single day and the unthinkable can happen even without so much as a warning, certain things become amazingly clear.

   I need my family more than anything else.  There are a lot of difficult and hard possibilities that we could face - especially in these often tough times - but even the threat of unemployment, foreclosure, and persistent creditors I think pails in comparison.  Thankfully we've been greatly blessed and have weathered the past few years well; still I can't imagine anything that could have happened that could come close to the horrible reality that has hit too many families.

   I realized a few years ago why I am here.  I didn't become the famous architect that I had grandiose dreams of in my younger days.  I did not amass great wealth and luxurious belongings.  I don't while away all of my time with globetrotting and fanciful events.  All of the things that I once believe were going to be my benchmark of success.  Instead I was blessed with something far more deeply meaningful.

   My legacy will not be a tourist attraction, it will not be a great literary work, it will not be a piece of stone or canvas for people to adore.  Indeed, my legacy may prove to be more profound than all of those put together.  It turned out that what I wanted was not what I really needed, but by grace and luck I stumbled into something far better than I could have ever imagined.  What I, with my wife, brought to this world are two beautiful children.  Full of wonder and curiosity, charm and joy, love and kindness.  In retrospect, I find my dreams of years ago mostly silly now as I know that those things could have never brought me as much as these two little miracles.

   I think that last year I was probably still overwhelmed being only about 14 weeks in, but this year as it got closer and closer I still could not think of anything else that I wanted.  Even today when people asked, only one thing came to mind.

   Today I realized that until there a cure, I will never blow out another candle with any other wish.

Sunday, November 7, 2010

Hidden in plain sight

   All I saw was about 4" of tubing and I knew he was one of "us".  This morning, two pews in front of us I noticed the short loop protruding from under shirt and I knew what was at each end of it.

   It's interesting, I think, to stand back and look at the world from outside the DOC, the support groups, the fundraisers, the clinic appointments, and to for a moment take note of and appreciate the level of unawareness there is.  I'm willing to bet a weeks worth of lunches that not even my aunts and uncles on either side of us even noticed let alone the rest of the congregation.  Jonathan saw the Medtronic clip on the outside of his pocket and knew right away what it meant.

   It's almost like a secret society.  If you know what to look for, it really doesn't take long to find it.  Somebody has their pump clipped in their pocket.  Somebody has a blue circle pin on their jacket.  Somebody has a sneaker on them somewhere.  Yet at the same time, when we go back to normal speed it all gets caught in the blur.

   Shortly after Jonathan was diagnosed, I found out that someone I had known, more of an acquaintance, of about 2 years had been a Type 1 for almost 20 and I never would have guessed.

   I guess my point is, it's all around us.  Aside from our own D battles, if our children (and some of us) didn't have diabetes, it would still be there and as prevalent as it is, it's still hidden.  There are no braces, or crutches, or chairs, or special transportation, or physical differences or interpersonal challenges.  It's all hidden on the inside, sometimes only as deep as a t-shirt.  No wonder it's so hard to get people to understand and remember.

   But I do have hope.  I do because I am seeing it more.  I'm seeing more stories in the paper, and online, and TV, and radio, and I hear people talking about it.  Maybe I'm overly optimistic, but some days it feels like a snowball that is going to roll out of control and avalanche the world with information and awareness.  At least I hope so, because in order for them to help, they have to know.

   November 14th is World Diabetes Day.  Tell everyone why next Sunday is so important.  Tell them why it's a BiG blue day and keep pushing that snowball.

Monday, November 1, 2010

The truth is... I am Iron Man

   Maybe it's because he's such a great looking guy....  Maybe it's because he's so popular with the ladies....  Maybe, it's because he really is as cool as a billionaire playboy...  Or maybe, just maybe, it's because he has a miracle of technology plugged into his torso.  But no matter how you slice it, he's my hero!

   Someone asked me today "How do you do Halloween with Jonathan?"  To which I responded "Well, first we find a really cool costume, then we dress him up and give him a bag.  Finally we send him running house to house screaming 'trick or treat'..."  And I was once again labeled a 'smart-ass'.  Fact of the matter is, we all know it looks a lot easier than it is.  

   Factor in assumed activity to the dinner bolus, set temp-basal, check BG often, have juice boxes on hand, and try to keep up.  I've never been a much of a juggler in a practical sense, but it kind felt like we were marching down the street with our balls in the air.

   I'd like to consider myself to be fairly non-judgmental, and I honestly don't remember having an opinion on diabetes and Halloween before, but I can imagine there of plenty of people out there who would shake their head at the notion of a diabetic child going trick-or-treating, and maybe even a few who would question our fitness as parents for allowing such an activity.  The simple matter of fact though, is that Halloween is no different for a diabetic child as it is for any other (at least not in their minds) and the irony of it is that most, if not all of our kids, actually are healthier trick-or-treaters than some of the other kids because they are typically more responsible (ok, with some guidance) with their sugary treats and don't gorge themselves on piles at a time (like I did when I was a kid).  He, and his sister, each get one - occasionally two treats per day as desserts after a meal (usually lunch - sometimes dinner), and his is factored into his carb count.

   Halloween this year, that is the night of, wasn't as big a deal D-wise as some may think.  Actually, there was no candy consumed by either child last night.  In D terms it was no different than a long after dinner walk with some extra fun thrown in.  I really don't want to over-simplify it (a 3.8 / 68 half way through was a big F-me moment), but the things is as much as it's harder than some may think, it's more doable than they might imagine.

   The thing that amazes me though about Jonathan is, over the past year had change, when special treats come up he doesn't put up too much of a fuss if his sugar is high and he has to wait until later.  He's shocked the hell out of both his teachers with how good he is about it.  Not just Halloween, but birthday cupcakes, craft snacks, and a number of other seasonal items.  Sometime he's not too high and there's no concern, but if he's in the 20's (>360) the teacher feels uncomfortable about sending him up higher, and really she's right.  As much as I don't want him to be excluded from special activities, he's better to wait until later for that special treat and have something more sensible at the time.... and he never puts up a fuss about it.

   Calm, cool, collected... and great tech for battling evil... he is a real Iron Man.

Wednesday, October 13, 2010

A Moment to Celebrate in a Journey Unfinished

    Last night was a good night.  I came home so wound up I didn't think I would be going to sleep.  My nervousness had been building all day as I counted the hours until I would take my turn in front of the school board with our good friend Nicole.  I rushed through my morning routine to listen to her interview on the radio.  I cursed the satellite company because they don't carry the channel that her televised interview was on....  I could NEVER be a mother of 6, let alone keep up that pace (she rocks!).

   As much as I feel uncomfortable with public speaking, I couldn't keep silent on this.  School was our first and biggest issue beyond diagnosis.  The issues with some of the schools gnaw at me incessantly.  So, when I saw the opportunity to work with a great group of people and fight for change, I didn't think twice and I've never looked back.  Change is necessary and must happen.... and last night the big wheels moved a little bit in the right direction as the school board trustees passed an amended motion to have administration create a consistent policy for students with chronic illnesses.

   I kinda expected that a stand-alone policy on Diabetes wasn't going to be the case and we'd end up as a chapter in a larger policy covering many diseases, but in a way I'm glad.  Working with Sue and Mark and Jan and Nicole has been, and continues to be, a great experience and if our work can help open doors for others, then I say all the better!

   I'll admit, I haven't been around that long.  This fight has been going on and off and on again for quite some time, so in the grand scheme of things I'm a little piece in a huge puzzle, but I am so thrilled and proud to be that small piece knowing that we are moving forward to better situations for our children and their friends and classmates who need this fight fought.

   Administration has until January 2011 to draft a policy for debate and voting.  Yes, there is still a possibility that this could get dragged out for God knows how long, or worse yet shelved.  There is a lot of work still to do in the coming months.  Our supporters are growing and we will need them just as much as we move forward and have our say in the policy and promote and support it in January.

   One of the first things I learned about dealing with D, and turned out to be a valuable life lesson in general - celebrate your victories, and then build on them.  I could never adequately put into words the respect, gratitude, and appreciation I have for those who came before us in this fight as well as the same for those who are with us in it now; what I can do is use every means at my disposal to continue the fight and help ensure that we only gain ground.


Last night's speech to the board:

   Good evening and thank you for this opportunity to address you.

   I have a 5 year old son who was diagnosed with Type 1 Diabetes 16 days before his first day of Junior Kindergarten.  It changed his life forever and we now battle a disease that is 24/7 and potentially fatal.

   Still in shock over the diagnosis, we were shocked again by how ill-prepared and unable the school appeared to be to support a young student with Type 1 Diabetes.  Jonathan turned 4 on his first day of JK.  Diabetes management and self-advocacy were (and still are) far beyond his ability. 

   During the first week as I met with the teachers and the principal and tried numerous times to contact administrators, it not only felt as if I was the first parent with the first Type 1 child in a primary grade, but worse, it seemed as if he was not going to be able to attend school at all.  We value the Catholic education system and the important role it plays in the development of a child; denying him his Kindergarten years was not an option we favoured. 

   Fortunately, after much persistence and determination throughout the first months, we were able to cobble together a care strategy for Jonathan.  This was a daunting task, that at first seemed impossible and in retrospect had a level of difficulty that shouldn't have been necessary.  We had to do this in isolation and with no apparent precedent.  We not only had to invent the wheel, but engineer the machine.

   Despite the roadblocks created by policy and apparently unwritten rules, we have been blessed with a principal and teachers who work with us as much as possible, within the limitations imposed upon them, to help ensure his safety and scholastic success. Our achievement, even with it's shortcomings, is not common and without standards in place, not only does every family have to take on this feat alone, even maintaining the level of support some have achieved is threatened by things as common as teacher and principal changes.

   There are upwards of 240 individuals of school age in one Windsor clinic alone, with an average of 29 new diagnoses per year of age 16 and younger.  Since this topic was last visited here, 2 more students have been diagnosed within that clinic.  This also does not include children receiving care outside of Windsor nor those grandfathered into the endocrinologists private practices.  Type 1 Diabetes is the #1 chronic illness among children.  This is not going away anytime soon.

   We are not asking that teachers and staff become medical professionals however, we are asking for standards and consistency as it pertains to the daily needs of students with Type 1 Diabetes, including:

- Clearly defined roles and responsibilities for parents, students, teachers, staff, and administration.

- Mandatory diabetes education of all school personnel who will be in contact with the student.

- Definition of the needs and rights of the students as well as anti-discrimination guidelines.

- A template for student specific care plans that would be developed by the student’s parents and executed by school personnel.

   There is no need to wait for a tragedy to prompt legislation as was the case in "Sabrina's Law".  We are fully aware today of the risks, and the appropriate steps necessary to mitigate those risks.  A policy, fostering a consistent and focused approach, would not only help facilitate a smooth transition, but would also eliminate the way each student is subject to the arbitrary decisions of individual schools.  With educated teachers and staff and a care plan in place, school personnel will be far better equipped to support the student’s needs.

   To delay or dismiss this would be an unconscionable violation of our faith and values.  Implementing a policy to better address the needs of the students is a small measure of work that could very well save lives, the lives of our children, our students; the lives that we claim have an importance second to none.

Today's article in the local paper:

***WARNING: There is a huge error that Nicole is working on getting a retraction printed - she was grossly misquoted.  I debated on posting this link, but I think it is a good reminder that no matter how many times we repeat ourselves and try to get the message across, there is enough ignorance* (for lack of a better term) that bad information can still get out and we need to keep sending the same messages to help people become properly informed.

*I use the word "ignorance" reluctantly because this guy is a good reporter and did well to get our story to print right away, but made a critical mistake because he misunderstood.


    Thank you to all those who support us, and thank you to all those who inspire us.

Thursday, October 7, 2010

The Princess

   I'll admit it, I have a great deal of guilt about this.  I racked my brain for the last 24 hours to think of something, anything interesting in my life that has nothing to do with Diabetes.  Me?  Well, not so interesting.  My work?  Yeah, no, this would be a 3 day b!*@# fest.  It took me almost 24 hours to figure out what to write about.  Here comes the kick in the head.  It's Alexandra.  I have a beautiful six year old daughter that is my princess, one of my few true loves, and it took me a whole day to realize how little time I spend talking about her.

   On December 10th, 2003, I took my wife to the hospital for the first steps of having labor induced.  The following day we went back for the big deal.  I remember sitting in the room finally cracking the book she bought for me "So, You're Going to be a Dad".  It was a fairly calm event in the beginning.  The nurse's name was Grace Kelly (yeah, how could I forget that).

   Shortly after 5pm she was having an emergency C.  There was meconium in the womb and she was not dilating past 4cm.  We actually bumped another mother out of the OR, which may not be a big deal on any other day, but this was the grand opening day of the new ward at the hospital and the closing of the maternity ward at the other hospital.  Alexandra was officially the first baby born after the big change.

   After a big fight - Alex vs. the OBGYN (she scooted to the top, not wanting to come out, first proof of superior intelligence) I remember, and will never forget, the nurse handing her to me.  I cried as I fell in love in a way I never had before and never before imagined possible.  She was the most beautiful little person I had ever seen.  It was a perfect moment.  It's a moment I can't help but get choked up over every time I think about it.  If I were Robin Williams in Hook, this would be my happy thought to fly.

   I know everyone says their little baby is the most beautiful and special - everyone's right - but Alex was our little bundle of beautiful perfection.

   She has grown and changed quite a bit over the years.  She is smart and goofy.  She can get her b!*@# on, and she can give you that look that will make your heart melt.  I've tried extra hard in the last 13 months, 1 week and 2 days to make sure that she gets some extra special attention.  Unfortunately, the matter of fact is that Jonathan often needs a little extra.  I try to, each week, make some special time for just her and I to do something.  Usually it's Sunday mass and then brunch, but with recent changes Jonathan can now more easily join in odd hour meals so he's joining us at church.

   Alex is in grade 2 now.  She is quite popular and has many friends (she's doing way better than I did anyway).  She's not perfect; a little better than the average student, but she's bright and full of life and her teachers are quite pleased with her progress.  She says she wants to be a dentist when she grows up.  I'm sure that may change a dozen times before high school.  Really, it doesn't matter to me what she chooses as a profession as long as she's happy, secure, and has a full life - God willing some grandchildren for us so I can have some sense of payback.

   I love my little girl more than life itself.  She is one of the most precious gifts I have ever received, and I will love her for ever.

Here is my Princess:

Tuesday, October 5, 2010

There may have been more air in my head than in the line

   Yikes!  28.7 (517)!  That was the call from Latchkey at 9am this morning as I was in the middle of a conference call with a customer and our plant (not to mention the pesky sales guy that was motioning to me through the window because he needed something for another client).  My first thought: #*@&!, another kink.  My second thought: Latchkey can pump - go for it and call me back in an hour!

   10:10 Latchkey: "He's 7.7 (139)."  Me: "Did he have his snack yet?"  Latchkey: "Yes, at 9:30.  We're going outside to play now."  Me: "Ok, that's a much better number."......  After I hung up the phone my math thingy started working.... 28.7-7.7=21.... 21/1hour.... #*@&!.....  Wuife IMs me: "You probably should have had them test again to confirm the high."....  #*@&! And in the car we go.......

   I get to the school at 10:20 (it's only about a 15 minute drive from the office).  I test him again - 7.4.... Phew!  I pull out his pump to double check settings (I did a quick-draw battery change this morning right after breakfast).  All is as it should be.  Then I notice at about a palm-width outside the reservoir there is an air bubble about 1 1/4" long.  #*@&!  Then I look along the line and see about a half dozen ones along the way.... #*@&!  #*@&!  #*@&!  So now I wonder if it was a bad reading or he wasn't getting insulin... I give my head a shake and look at the math again 21 / 1hour....  Bad reading.  I disconnect, pull the reservoir, tap the air that wasn't there a day and a half ago out of the reservoir, rewind, prime out the air, reconnect.... stopping short of a fixed prime... Phew!

   I put him all back together and make my notes.  It's only been about 15 minutes, but I test him again... 6.9.  OK, he's pretty much flattened out, no need to give carbs.  I ask them to test again at 11 and call me.  On my way back to the office I call the clinic to let them know what happened and get caught up on their feedback from the weekend and yesterday.  Mary suggests to me to give him a little something.  I take that beautiful and correct piece of advice and stick it in the back of my head thinking if he goes south again at 11:00 (just 15 minutes away now) that I'll do that, but I've fallen for this trick again and bounced him right back up.  We chat for a while, schedule the pump changeover for Friday, and ponder the mechanics of the body of a child and how insulin works - thinking of the steep drop and then trailing out into the low 7's high 6's.

   I get back to the office and a few minutes later the phone rings... 6.7.  Booyah!  Great number and the nurse will be there in 45 minutes.

  11:50 - Phone rings.  Nurse: "Hi, he's 2.8 (50)."  #*@&! "We gave him a pack of fruit gushers, what would you like us to do?"  Huh? Do?  Read the orders!  Me: "Ok, give him his lunch and bolus after based on the BG of 2.8 and his 34g of carbs."  Admittedly, this is the first low she's had to deal with on the pump.  So he spent the rest of the day in the mid to high teens.  He came down into the 11's (~200) as we sat for dinner.

   I started into my eggs hoping that the glucoaster ride was over for now and pondering the funny BG curve between 9 and noon.  Then it hit me like a ton of helium tanks on the head....  That little streak of great numbers at 10-11... Snack carbs!!!!  The animal crackers made a brief appearance to save the day, but they just weren't enough for a bolus that probably should never have been.... Sheer, dumb luck!

   My little trip to school today was educational:

1) Odd-ball high?  Retest (I got an F)

2) Steep crash, give extra carbs? Yes (trick question, the temporary "good" numbers brought me to a D+)

3) You only need to check for air bubbles when you set up the line?  False (I must have slept in that day, C)

4) And the bonus question: When in doubt, carb? Yes (over thought that one way to hard, B-)

Result: Do not pass go, do not collect $200, if you ever want to make it to Boardwalk, remember what
you learned on Mediterranean Avenue.

Thursday, September 30, 2010

Joined another club

   Without using a stainless steel cannula it was presumed inevitable.  No time was wasted in getting to it.

   We've been chasing highs for the last 36 hours (high teens - low 20s, 320-414).  Yesterday Jonathan seemed to have a slight fever (warmer than usual forehead) at lunch but was otherwise himself and wanted to stay at school, but when he got home his temperature was normal, as well as this morning.  The working theory yesterday was a bug.  Bobbie is still fighting something off and I just got rid of a sore throat and cough myself.

   This morning I got a call from Latchkey - BG: 28 (504).  He was completely non-symptomatic and very much himself.  I had them bolus and still give him his snack and headed over to get him.

   His next set change was supposed to be tomorrow evening.  Since there was no fever today and his numbers were still high we decided it could be a site issue.... Sure enough...


   A new set is in and he's going to test hourly for the rest of the day.  The remarkable thing is he was almost completely asymptomatic.  I now have another mindset change from MDI and another lesson learned.

Monday, September 27, 2010

Upgrade!


   Oh!  And speaking of cool......


    The watch kinda took a backseat today, at least in the "new" and "cool" arena.  I know I kinda left that little cliffhanger at the end of the previous post...  I did that on purpose, because I knew something.  I pretty much knew it when we started Jonathan on the pump but it wasn't a sure thing until the middle of last week, and even then we didn't have it in out hot little hands.


   Well, now it's here.  Fresh through the Health Canada approval process and a brief stint with the Assisted Devices Program, Jonathan is one of the first people to get Medtronic's Veo.  Built upon the same platform as the Paradigm, it does all that his current pump can... and more.

   Where to start...  There are many subtle differences, like bolus in 0.025u increments up to 1, then 0.05 after that instead of 0.1 and basil in 0.025u/hr instead of 0.05.  Reworked set change menu for less button pushing.  On-board event capture to record BG, insulin, meal, exercise and other as opposed to getting into CareLink to enter it into the log book.  IOB is now on the status screen.  And there's probably a few other little goodies in there I have yet to come across.

   One of the things that helped us pick Jonathan's Weapon of Choice was the built in CGM system.  Despite the sensors being financially prohibitive for us to use them all the time, we can and likely will used them from time to time for any number of reasons...  Here's the biggie and the top new thing for Veo - Low Glucose Suspend (LGS).  It does what it says... When BGs meet specified criteria, insulin delivery will be automatically suspended for a period of time.

   We knew Medtronic's Pathway Program was there to move him up as new technology becomes available, and because we are within our 90-day trial period, we get a full ride to new.  Even if something bigger and better comes along in the next 5 years we can still choose to upgrade with a cost dependent on where we are in the cycle.

   There are two main things I want for Jonathan when it comes to Diabetes: 1) First and foremost, a cure.  2) Until a cure, the best possible management of his diabetes.  LGS is a step, and one side of a coin in an artificial pancreas.  The dicier side is the high glucose correction / automatic bolus.  Those two things, coupled with a dual hormone delivery system (glucagon) are the basis of a self contained support system and along with the integrated cannula / sensor would be no more intrusive than the current infusion set.

   My patience is really a hypocrisy.  As much as I want to get better and better management tools, I really want a cure.  I want a cure for Jonathan, I want a cure for all the kids that have recently been diagnosed, I want a cure for everyone with some years under their belt.  I want a cure for all the people that have been waiting decades.  I want a cure for the ones that are going to be diagnosed.  I want the CDEs, and the pharma reps, and everyone making a living off of diabetes to find their living somewhere else... and I want it NOW!!  But in the mean time, I want a safe and happy and healthy Jonathan who can grow and learn and reach his potential, and then go beyond it.

   To that end, next week, after the nurses at the clinic are trained on the Veo, Jonathan will have the latest and greatest available to him.  :)

Friday, September 24, 2010

Watch me!


   I'll spare you another round of "how much we love the pump".  Believe it or not, we did find one shortcoming that we are not crazy about right from the beginning.  It's nothing huge, but it was concern enough that I decided to add to Jonathan's gear.

   When we bolus Jonathan and have the BG reminder on, we can set the pump to alert when a certain period of time has elapsed.  While this is a neat feature, it has two issues that we don't like: 1) Inside his neoprene case the "discrete" alarm is not loud enough to be heard reliably, especially in a busy setting, like a classroom or a playground.  2) The alarm automatically unlocks the keypad, and you can't change that.


   For the past few weeks, we've been relying on the teachers and Latchkey staff to remember when to test him, and they've done.....

    *** This just in... mystery solved.  We've been randomly missing data in Jonathan's downloads... they're been randomly using his the meter I put in his lunch bag as a back-up... his old Accu-Check... the one that doesn't talk to the pump." ***

                                .......  a great job (aside from using the WRONG METER).  And that little tidbit did come to light in the middle of my statement of praise.  On the bright side, they are testing, regularly, and recording.  And poo-poo on Medtronic for not allowing manual inputs of BG on the CareLink site - not thought through too well if I do say so myself.


   OK, back to our dilemma of inaudible audibles and auto-unlocks....  I thought to myself, Jonathan has taken such good care of his Medic-Alert bracelet over the past year, I think he could be responsible for a small wrist watch.  So one day while I was on "vacation" a couple weeks back for pump start I started looking around.  I stopped at the closest Wal-Mart and started looking at watches.  They had all kinds of cool little kids watches, most digital, some with an alarm (1 alarm).  I asked the lady at the jewelry counter if they had kids watches with more than one alarm.  She looked at me like I was asking for a $20 genuine Rolex.

   As with many good things, I decided to hop right to the internet.  I was amazed and the variety of "medical watches" available.  There were even ones geared specifically towards kids.  There were some amazingly beautiful ones that you might have expected to find in the collections of James Bond, Bruce Wayne, or Tony Stark.  And, as you may have guessed, the majority of them were grossly overpriced, at least for my taste...err.... budget - my tastes exceed my budget, but I'm cheap so it all works out.  It took a couple of hours, but I found a great deal on one of the watches I though could be the ticket.  I saw it as high as $75-80.  But I found it for $32.07US + $4 shipping to Canada.

   From what I can gather it was originally intended for children with "potty issues", but with 8 alarms per 24hr period...  guess what....  it's the new string-tied-on-a-finger.  This weekend we'll be "training" Jonathan to respond to the alarms with a BG test.  The alarms I've already programmed in are about 2 hours after his school-day breakfasts and lunches.

   Funny, I started this blog post with a peeve in my head about people doing "something" wrong and the BG not getting to the meter, and ended up with a new working theory.... A neato watch that Jonathan will hear and no meters that don't link to the pump should help ensure we get all our data!


   Anyway, the watch is a great concept (I think).  We just got it and he starts wearing it tomorrow so I can't attest to it's greatness yet, but I think the concept was definitely my cool idea of the month.


Oh!  And speaking of cool......

Monday, September 20, 2010

Happy Birthweek


   It started out simple enough... it was going to be a class party at McDonald's, the same party Alex had in her SK year.  As with almost all things D, planning is everything - so yes, I booked a September party back in April.  We were there one day for lunch on a weekend and I knew the parties fell at off peak hours.  Jonathan was still on MDI and at the time a pump was not high on the priority list (my how things changed) so I decided to get it booked very early to they could accommodate a noon meal for the party.  The manager was shocked that I was booking so far ahead, but was understanding and wrote us in.

   About three weeks ago my wife called to confirm a few things and was told that we didn't have a booking, and what's more, the restaurant was being closed for renovations after labour day.  WTF?!?!?  I was pissed.  Well screw you McDonald's, you just lost out on some business.  It would have been one thing to call and let us know that other arrangement had to be made, but to completely ignore it until she called them, that's just bad customer service... But anyway, that's beside the point... Jonathan was up for bigger and better things....

   Jonathan's birthday actually started a week ago (B-day was Sep. 14).  My mom came to watch the kids on the Monday (13th) so Bobbie and I could go to a JDRF Outreach parents night, so she brought him a present and the festivities began.  The morning of the big day, Jonathan walked out of his room and asked "can I have my zhu zhu pet now?"  (Rewind back to just after Easter - Jonathan: "Can I have a zhu zhu pet?" Mom and/or dad: "Maybe for your birthday." Which went on for about a month and a half until we told him to stop asking or the answer would be no.)  Back to B-day.  First words, not "Good morning.", not "Can I have oatmeal?", it was "Can I have my zhu zhu pet" that hasn't been discussed in months?

   They did a little birthday thing at Latchkey (it was his off day), after which we attended the meet-the-teacher BBQ.  We rushed home so he could open his presents and get him ready for bed (as luck would have it, it was also the evening of the school board meeting with policy for diabetics on the agenda).  I hate to say it, but the day of was with little fanfare, but he was more interested in what was to come.  Jonathan is the only kid I know that can turn a birthday into a birth-week.

   Wednesday, in class, he was King for a day.  He got to sit in the little throne (rocking chair) next to the teacher during story time.  He was pretty much the center of attention for the majority of the day - and still has a hard time understanding why it's not like that the other 364.  He got birthday presents from the teacher and a big card from the class.

   We took a little break from the festivities for a couple days, which worked out well because Wednesday evening he went back on the pump (a pretty cool B-day event, but would have rathered to never have gone off).  Thursday and Friday were more like the regular routine and good thing too because between the excitement of birthday, site infection, hospital, doctors visits, a week of bi-hourly checks all night and more nights like that coming, we were on fumes.

   Saturday was the biggie.  After the McDonald's fiasco, Bobbie decided to book a party at an indoor pool.  It's a relatively new facility with two ice pads and the wave pool / water slide (among other things like a gym and exercise classrooms).  The kids played in the water for about an hour before being shuffled out through the change rooms and on to a hot dog and chip linner (lunch/dinner, it was 3:00) and cake, followed by presents.

   What Jonathan didn't know though was that luck was smiling upon him.  Mommy won tickets to see the Windsor Spitfires (our back to back Memorial Cup hockey champions) take on the Erie Otters in their final pre-season home game.  Doubly lucky because she actually wasn't the first one drawn for the tickets.  Her co-worker actually won first, but had called in sick that day and when called told them to re-draw.  This was Jonathan's first hockey game and I wanted to make a big deal out of it, so Friday afternoon I called the arena and asked them to add him to the birthday roll call and then Saturday morning I went to the arena and bought him an official jersey.  I gave him the jersey at the end of the pool party and told him we were "going to a big hockey game".

   We got to the arena about an hour before the game.  Now I'll admit, OHL is definitely smaller scale than NHL, but it's just as exciting a game because what some of these guys may lack in professional experience they make up for it in drive and passion.  We watched the warm-ups and the Zamboni, after which Jonathan asked if it was all done.  The game started at 6:00.  We made it through the first period alright however, Jonathan is not big on loud noises.  On top of that, his BG was through the roof, either because I grossly underestimated linner, or because he was stressed to no end, or more likely both.  They announced after the first period that there was an opportunity after the game to meet the Spits and get souvenirs signed, so I was really hoping to make it through the whole thing and give Jonathan the ultimate - first game, first jersey, meet the team, and get the new jersey signed.

   Alas, it wasn't meant to be.  For he first half of the second period he was begging to go home.  He wanted to enjoy himself.  In between clapping for plays and goals and watching the action, he would bury his head in my chest when the music came on and tell me he was tired and wanted to go to bed.  His BG was in the mid-20s (450ish) despite the little doses of insulin I was pumping into him.  I was trying to be cautious because as much as stress puts him through the roof (not often, he's usually pretty laid back) real excitement makes him plummet like a trooper without the para.  I was actually starting to wonder of the site was going bad.  As much as I wanted him to not miss out, he wasn't having as much fun as he wanted to and I needed to get his sugars down.  Even without D though I doubt he would have made it through that whole night.

   I found out after the fact that my brother was at the game and saw his birthday announcement come up on the scoreboard ( :( I sooo wanted a picture of that!), and his jersey is unsigned, but his BG dropped to target within an hour of leaving and he went right to bed without protest when we got home.

  OK, so apparently I was more excited about the game than he was.  I'll admit it, I was a little bummed out that it didn't go as planned, but it was mostly because he didn't get the whole experience.  Maybe a day game next time.

   Back to the birthday... believe it or not, the game (pardon my rambling, but I thought it was somewhat relevant re: D) was not the end of it.  Yesterday after lunch we packed the crew in the van and headed out to Bobbie's parents house for yet another day of Jonathan.  Much mid-afternoon snacking and some cake and ice creme were enjoyed followed by... you guessed it, more presents for Jonathan.  I think this finally birthdayed him out because he hasn't made mention of it being his birthday all day.  he does insist on making sure we know he's 5 now, but I think the party is behind us for now.

   After almost a week of issues and follow-up there of, it was nice to have a week of unusual fun (despite a little site scare).  And now I have just a little under three months to come up with something really good for Alex :|

Thursday, September 16, 2010

Reluctantly I did it, and very glad I didn't miss out

   I meant to get to this about a week or so ago, but as you know things got a little hairy (speaking of a little hairy; and yes, infusion sets double as miniature waxing strips).

   When we first met with the Animas rep, she insisted that we were going to each wear a set to see what it was like.  Quite frankly, she kinda rubbed me the wrong way about the whole thing.  Even when we had the reps out to the house, she was still harping on it.  I can honestly say that her pestering me about it didn't influence my decision though.

   Once we got the pump and I started playing around with and getting things set up, I became a little curious.  After a couple of weeks of seeing it sitting in my office, a little thought started to fester in the back of my head.  For some strange reason I though I might actually want to wear it myself during the training (I must have been having one hell of a masochistic moment).

   As the day of reckoning drew closer, I became more and more nervous.  I have had a life-long issue with needles.  More of a mental thing than a physical thing.  I know they hurt a little, but are bearable however, the thought of a foreign object being inserted into my body through the skin gives me the heebee-geebees.  There were a few times where I though I could wear the pump but forgo the set itself.  In the end though something told me I needed to do this.

   At the clinic that morning we reviewed some things and went over the  pump and how to use it.  A couple hours into the training we got to the practical hands-on stuff.  I rewound the pump, filled a vial, primed the line... and then....  All eyes were on me, or rather my big white belly, and my shaking hands holding a site and an inserter.  I put them together, cocked it back, paused for a moment as I tried to see through the blur to the area I had wiped with the alcohol swab, and then I did it.  With a click and a pinch, it was over.  It was a lot like a mosquito bite.  On one hand I felt a little silly for all the anxiety I had let myself experience, but on the other I was glad it was behind me (at least for a few days until set change).

   It was kinda neat actually.  Outside of the diabetes aspect of all this, I like gadgets and new things so it was cool.  A few people even said to me "I didn't know you had diabetes", to which I replied "I don't, I'm the test monkey."  By the end of the first 24 hours I was kinda used to it (except the sleeping part).  I started to forget it was there until I had to deal with it for whatever reason, be it a meal, trip to the washroom, knocking it with the seat belt buckle...  And then Nicole asked me what I felt was a pretty profound question "So how does it feel to be connected to your son's life line??" All of a sudden it hit me.  This wasn't just another pen or syringe, this was going to become part of him, this was going to be a 24 hour a day lifeline.

   I knew that switching to the pump meant no more long-acting insulin on board, and I knew that it was a life-sustaining device for him. I understood the mechanics and logic, but the moment I was asked that question it became so much more, more real than before and for my few days it became a little bit of a symbol of diabetes and a life with managing it.

   I said from day one that I would switch pancreas' with Jonathan if I knew his immune system would just get him again, and as sacrilegious as this sounds: I kinda felt, for a moment, like I did.  For a couple days it was me instead of him - well, more like me and him instead of him alone.  As much as we do to manage his diabetes now, this is truly his burden - one he will carry for the foreseeable future.

   After a few days I didn't want to give it up.  In fact, I started thing about taking saline shots at meals with him.  I didn't do that though, and probably a good thing too because I would have likely been spending more time with men in white coats.

  Although it was brief, I'm really glad I didn't miss out on the opportunity to do this and share a little piece of Jonathan's journey.  Things are back to "normal" now.  Jonathan is the only one getting poked and prodded.  Even as I write this, I wish I could go back to two weeks ago.  There's a lot about the experience that I still have a really hard time describing, but I would definitely recommend to any parent, or anyone for that matter that has someone close to their heart living with D, to share in this brief experience with them.  It's definitely worth the poke.

Wednesday, September 15, 2010

Down, but not out

   We're baaaaaccccckkk!

   Well, what can I say? It was a s#!^^$ 5 days, but things are lookin' up.  Like the mainstream pop phenomenon the Willie was, our pumplessness was short lived.  Of course Jonathan had stellar numbers on the shots today, but we will get there with the pump too, and beyond.  As always, thanks to all for your kindness and support!

   I asked Jonathan if he wanted to go keep the shots and he looked at me like I had two heads - which was the second funniest thing this evening right after the kids did a duet of Flo Rida's Low in the car on the way home from school.

A song is stuck in my head

One, two
One, two, three, four

On the pump again
Just can't wait to get on the pump again
The life I love is getting shot free insulin
And I can't wait to get on the pump again

On the pump again
Eating things that I've never been
Sleeping in on Saturday mornings again
And I can't wait to get on the pump again

On the pump again
Me any my "AAA" beta cells take trip
We're the best of friends
Insisting that I know my IOB and have more on hip

On the pump again
I just can't wait to get on the pump again
The life I love is getting shot free insulin
And I can't wait to get on the pump again

On the pump again
Me any my "AAA" beta cells on a trip
We're the best of friends
Insisting that I know my IOB and have more on hip

On the pump again
Just can't wait to get on the pump again
The life I love is getting shot free insulin
And I can't wait to get on the pump again
And I can't wait to get on the pump again