Jazz

Cadence has always been a bit of a watcher by nature. Every since she went through her experience of becoming diabetic, she's been standoffish of things and people that are new and different. Her white coat syndrome is entrenched in subconscious experience. A great example of that is her bicycle. I bought her a bike 2 years ago and she has always feared it yet loved it at the same time. It felt like a personal failure for us, as Nicole and I live for riding, it's always been the reason why for us. So for 1.5 years Cadence would walk her bike when we'd go to the park always fearing going too fast.   Fearful enough that her bike was always best utilized when carefully walked, not recklessly ridden.




And then there was Jazz.

 Jazz is Cadence's best friend. They share more hugs than words and everytime we go driving she asks "is that Jazz's car?". If she was in her 20's we'd probably have a stalking case on our hands but since they're only 5, it's just as cute as can be.  Jazz took to riding her bike almost immediately, likely thanks to her super-parents Tracy and Rob. She ripped up and down her block with "no training wheels" well before Cadence had confidently ridden her first hill. The competitive juices of Cadence came to the surface when she found this out and she was now ready to drop the training wheels and "rock it like Jazzy-Jazz". I have to admit I was fearful of this next step since she barely liked her bike to move let alone tip over. So a day was spent with me running along side of her gradually lightening my grip. I wasn't convinced on the success of this venture thus the training wheels and a crescent wrench went along for the ride in her pink, flower-powered basket, hugged compassionately on all sides by her favourite stuffed animals. But as the evening wore on there was a moment when I stopped and she continued on 2 wheels, by herself. She stopped after 4 pedal strokes of two-wheeled freedom. Looked down at her feet to see what she had done and looked back at me with eyes that said "I did it! I really, really did it...(like Jazz)". It's a moment that almost every parent gets to experience, so I don't mean to sound like this is something that is so unique and special, a single experience in existence. But... it was our experience, amazingly unique and special... truly, a moment where she broke free of our grip on her life. It was a landmark event where she was independent of all crutches. Whether she felt this is for her to answer but I can only tell you that she has changed immensely since that moment in our eyes.

A week later, Cadence raced her first Triathlon in Windermere, with Jazz of course. I can tell you it was the most fun I've ever had in a race and I hope she felt the same way. It was so amazing to see her go through her mental race prep, the ingrained genetic traits that you pass on indirectly to your children. Before a race, I usually get quiet for awhile and look on in the distance focusing on my headspace. Right before the start, i become nervously giddy and social with everyone around me. It was so cool to see that in her. I can only hope she has better success than me ;P .

The race was an absolute BLAST! A 50m swim to transition...hugs with Jazz, then a 1.5km bike ride to transition...hugs with Jazz, and then a 500m run of which I was at her side for the whole thing. It was just an incredibly cool moment. She of course kicked it at the line and "beated Jazz" but she described it as "I winned before Jazz winned". Jazz would get her back next race however, grabbing the victory in the last 25m of the race. Well played Jazz!






"I WINNED"

Cadence is a different kid since she dropped those training wheels and never looked back. She has become brave, adventurous, mischievous, and we love it. She wants to bike everywhere, explore, and do stuff. She is bolusing her own insulin now, doesn't cry for infusion site changes, has even decided she wants to try and do one herself soon. It's really amazing. The added bonus to all of this newfound independence and confidence is that it's rubbing off on Hailey. She can't use her brakes just yet but she's all about dropping her training wheels! We're tempering that process. Additionally, Nic and I have become re-passioned with cycling and fitness . We're back into it and man does it feel good. So a big thanks goes out to Jazz.  A big thanks to my Cadence, since you Winned, we winned!

Kids need a challenge to help them explore what's possible.  To hold them back from experience serves to hold you as a parent back.  Allow your kids to explore and be mischievous, in what they discover could be a great awakening for your own spirit.



Onward without restraint,
b.



Oh and also just a quick little P.S. - in all of the stuff that's happened this summer I'd just like to say: F*CK YOU Diabetes, our last A1C was 6.9!

Overheard today -

Cadence asks "mom, how sick was I when I was a baby?" We talked about being unconscious, bags of fluid and insulin going into her body by tubes, about the drill and syringes that pumped fluid into her shin and the central line doctors put into her heart to save her life. She asks "did they take all the love out of my heart". I smiled + said, "no sweetie, they kept you alive so you could keep lots of love in your heart!!" She smiled back and said "that's good, because I love my family, so much"

Just Plain Awesome.

new discoveries

I supplied the venue for an Insulin Pump information session last night at my clinic The Calgary Centre for Health. We will sometimes open up our facility to different interest groups, providing a free space to host a seminar. I had boatloads of stuff I had to get through at the office, so spending a few extra hours at the clinic last night wasn't a bad idea. There was about 20 people, there mostly parents of diabetic children. Very few people get to spend an evening with a bunch of strangers but be intimately connected through a condition. It's really kind of comforting to be in the presence of so many that know the struggle, it's an affirmation that while wandering the house at 2am looking for test strips, infusion sets, batteries, juice boxes, and hail Mary's....there's someone close by doing the same thing. The mid-day yawn and eye rub could almost be the universal handshake of diabetes.

Animas brought in Lorraine Anderson, a certified Diabetes educator and fellow pumper. The brain trust of Ward Clark, territory Manager for Alberta, the great Joe Solowiejczyk, and Teresa from the Alberta Children's Hospital were among us in attendance. The content discussed was far more in depth than just how great pumps are for managing diabetes. We chatted about matching food to insulin blousing, how to really take advantage of combination boluses, pizza bolus, super bolus, all of these great concepts that many of us have heard of but been too nervous to experiment with. Lorraine did an amazing job of empowering the group to have some "fun" with diabetes, see if you can out-think the beast. I consider myself fairly knowledgeable about insulin pumping, but found myself completely engaged and fascinated by the discussion. In fact, texting the discussion with Nicole to make sure we remembered the information. It was a really great discussion and to be honest, I found it exciting...which is so lame, but it's true! The opportunity to come at Cadence's disease from some different angles. We touched on a fair bit of topics that are frowned upon by some CDE's but in this discussion, we learned the reasons why we all do it incognito. For instance, pre-bolusing 20 minutes, overriding the pump recommendations based on instinct and experience, acceptable blood glucose departures 2 hours post meal, etc. It was great. The only issue I have this morning is that pile of stuff I had to do last night....is still sitting on my desk but i'm going to try and attack it from a couple new angles.

B.

Stats.

I've been asked to give the keynote address at the Alberta Diabetes Foundation Rations for Riches event tomorrow at the Calgary tower. 10 minutes to share what diabetes is to our family. I'm going to do a blog post in the next couple days to describe the room....I'm kind of nervous, but it's an excited nervous....it's an opportunity to change perspectives.

I had to dig up some stats tonight for the keynote and even I was amazed by what I found.

- 300,000 kids with Type 1 diabetes in Canada.

- 3-5% increase in diagnosis rate per year (that's how you spell epidemic)

- 17 BILLION dollars per year towards diabetes complications yet the Alberta government doesn't cover a single dime of preventative measures. Seriously.

- in the 10 minutes it takes me to speak tomorrow morning in front of all those hungry people, 120 kids worldwide will develop diabetes...and most of them will die from it.

It has to be stopped. Get behind JDRF, ADF, CDA, educate, learn, be part of the solution.

till tomorrow!

B.

dead in bed.

I'll admit I'd never heard about the "dead in bed" syndrome until a coupled days ago when a 13 year old girl with Type 1 diabetes went to sleep with a good blood sugar, in great overall health, and never woke up.

I will make no attempt to understand what the parents of this girl must be going through. I have myself watched my daughter's life flicker and come to within seconds of ending in my arms... is an image that I will never be at peace with. To actually have your child torn from you without an explanation, a cause, or a reason is unimaginable. Once again, diabetes gets off without a mark on it....dead in bed syndrome has no official cause but is responsible for 20-60 deaths per year or the equivalent of 6% of all deaths in type 1 diabetics under the age of 40 years old.

6% of type 1's die for no known reason. The assumption is that overnight hypoglycemia is to blame. But not diabetes, amazing. This was not the fault of anyone's, certainly not the parents, they did exactly what they should have...it's just one of those things...except that it's a young life ended shortly and without closure. I pray for their family that they can be a peace with this tragedy.

Over the last few weeks, out of a sheer desire for a full night's sleep, I have skipped Cadence's 2am blood test a couple times....3 years of an alarm at 2am 7 days a week, I needed a bit of break. To read this horrific news reaffirms that we need to be vigilant about our kid's blood sugars. Their life literally depends on our diligence both in the short term (dead in bed) and the long term complications. We also need to galvanize our efforts as warriors against this disease, educate, fundraise, lobby for a remedy. Just this morning a huge segment on our local news channel about the rising costs and complications of "diabetes" without identifying the types! It was from the Canadian Diabetes Association which is almost entirely type 2 focused, talking about prevention of long term outcomes and the cost of 2 billion dollars a year to the province. What they did not mention was that the Province of Alberta doesn't cover a DIME of type 1 prevention costs, insulin, test strips, syringes, insulin pumps. People who can't afford to protect their children, have no other option but to choose conservation of test strips, re-use a syringes, squeeze another few weeks out of that vial of insulin. It's not right and has significant consequences.

Teach people at every opportunity that Diabetes is multifaceted and needs the attention of citizens, our elected officials, the change needs to come, come swiftly, and be significant in order to prevent another young life ended without a reason.

Learn on November 14th for World Diabetes Day.

b.

A Little Slice of Peace

One thing that most parents of a diabetic fear is the night. Most parents put their kids to bed, sink into the couch and enjoy the time of no-kidness for a few hours. If you're a parent of a toddler diabetic...you play the "what would a pancreas do?". Bedtime, blood check, DECISON = snack, basal, or bolus and what's going to be best while she's unconscious for the next 8 hours. Lots of decisions to make.

For the last 3.5 years, I have set my alarm clock 7 days a week for 2am. I get up, walk down the hall to Cadence's bed, slowly creep in, pull back the covers to find her feet, lance her toe, squint to see the blood drop in the dark (c'mon testing light!!), see the number and decide what to do - DECISION - bolus, basal temp, wake to juice. Then I go back to bed, close my eyes...debate my decision...stay up for another 45 minutes because now I'm awake, made some mental calculations, started the mental machinery...and I get up at 5:30am for week absolutely trashed. I carry my luggage under my eyes :-) . Have I snuck a full night's sleep in here and there? Maybe once or twice. Usually what happens is I wake up to my alarm, decide not to bother, then lay there for 45 minutes thinking about checking her...then finally get up to do so, stay awake for another 45 minutes...rinse and repeat. LOL it's a never ending cycle of self-fail.

So last night, Cadence, for the first time that I can remember climbed into our bed at 10:30pm and stayed there. Normally this is a habit your don't want your kid to get into but strangely, this morning I'm kind of happy that it did. I still checked her at 2am but she was all curled up right beside me (makes me smile to think about it). The best part was that she was right there, I could hear her, know she's all good and I fell right back to sleep. At 5:30am this morning I had this funny feeling....oh yeah it was rest including piece of mind.

Weird.

Hailey has herself all around diabetes as well, she's been watching and learning for her 14 months of existence. Without the ability to say hi, she now knows the steps to checking blood sugar and gets mad when she's cant do her own everytime Cadence reluctantly has her blood tested - Oh the irony!

b.

Hormone Discrimination

Choose your injectable hormone wisely as it may be discriminated against.

I say that sort of tongue and cheek but it does directly stem from an interesting conversation that I had with the officials from the Calgary Public School system. As Cadence is getting older, she is starting to understand more about her disease and the role that it plays in her life. She is also asking alot more "why" type questions. These are great though, she knows exactly why she needs to have insulin. Being 3 years old, Cadence is getting to the age of going to school. An exciting, yet terrifying destination for us as parents as it will be the first time that we have to loosen our grip on her diabetes. In advance of the day, I wanted to find out more about how diabetics are handled inside of the school system and was quite surprised at the answers...or lack there of that I was provided.

I asked what the policy on diabetics in school is, to which I was told that there wasn't one. I then asked the simple question of whether or not someone in the school would be able to do a simple blood test with Cadence. She's 3 years old and can do it herself, but if someone in the school could supervise it and give her some insulin through her pump, that would be great. I was given the response "our teachers are not trained to do procedures, so no that would not be a possibility, but they will provide juice if required." I retorted "but how would they know if she needed juice without a blood sugar?" and was again hit with "our teachers are not trained to do procedures."

The conversation was stalling at this point so I tried to angle it a little differently. I said "okay, so if a teacher were willing to learn, based on my instructions to do a blood test and deliver insulin based on my direction, would that be okay?" Again, I was given the "our teachers are not trained to do procedures line.".

My frustration is growing a bit here, I can completely see their point on the issue: blood, DECISIONS, and most of all LIABILITY. So I asked my question a different way. "Alright, so if you have a child with a severe peanut allergy that eats a peanut butter sandwich because they're hungry, how would that child get an epi-pen or epinephrine injection?" I received this puzzler:
"All of our teachers are trained to use an epi-pen to an allergic child"....sounds like a procedure to inject a hormone doesn't it.

Giving juice to a diabetic is the same as giving a kid with a peanut allergy a peanut butter sandwich because they're hungry. The difference is how your chosen life-saving hormone is classified.

I asked them, what's the difference if the two are just injectable hormones? If Cadence did her own bood test and she required a set pre-set bolus of insulin...what would be the difference between an epi-pen and an insulin pen?

There was some dead air on the phone for a minute...and then...."our teachers are not trained to do procedures, as I've mentioned before, but let me give you the Principles number."

What's your school's policy on Diabetes?

B.

DIRONY

No, I didn't misspell the title, it is exactly that. The heart of diabetes is it's own irony. It's a disease of paradox, where everything that should be normal is in fact exactly the opposite of. There are so many ways and reasons to hate it, but sometime you just have to admire and laugh at how clever this foe actually is. It's a brilliantly designed disease. Attacks one specific cell among the millions in your body and produces system effects. It will never be held responsible, but will end a life. Takes the simple pleasures of life and changes them to stresses. It not only affects the host but everyone around them. It truly is a magnificently designed enemy.

The irony of diabetes is especially present in kids, it wages war on the behavioural, the social, the economic, and not to mention the physical. It seems that many things that are the saving grace of parenting and being a kid are the most dangerous in a diabetic kid. Confused? Here's some examples to prove my point.

If your 3 year old has a temper tantrum, most parents would let them hash it out until they settle. With diabetic parents...we have to do that and then treat with a juice or candy since all the thrashing around causes a low. We have to reward the tantrum. Awesome.

Diabetes 1 - Parenting 0.

If you are preparing a nice family meal for you kids and one of them decides not to eat? Most parents would say "no problem, but there's no food later." If you've injected your 3 year old with a pile of insulin in this case however..."okay, let's have a bunch of candy then since you're likely to go into a coma in a couple hours if you don't eat". Reward not eating with sweets. Excellent message.

Diabetes 2 - Parenting 0.

With normal families, if your kid wants to play with friends, you find no other better stress reliever than to watch your child's endless energy expended with other kids'. In a diabetic family....you stress about how much Insulin is on board, did she have enough carbs to buffer it....did I bring enough candy to get her out of the impending low?

Diabetes 3 - Parenting 0.

In a diabetic family, there's not many more uncertain things than a night's sleep. You can't sleep while worrying that you might sleep through a scheduled blood check, miss a low and your 3 year old getting in trouble. You end up getting up anyway, check the sugar and make a decision if you can sleep for another 4 hours or not.

Diabetes 4 - Parenting 0.

So many examples of how a little thing like a pancreas can take "normal" and turn it on it's head. It's not an entirely one sided battle however.

If diabetes has the upper hand one day however, and is letting the blood sugar go high....you as a parent take great sorrow in the fact that you have to put a needle into your child for the 4 thousandth time...however there is an unspoken guilty pleasure in the fact you get to fight the disease with a sharp object. Take that Diabetes!...take that!

Diabetes 4 - Parenting 4000 and counting. WIN!! ;-)

b.

Oprah on diabetes

I have to say, I love Oprah. I would be lying if I said I've never seen it, but the episodes I've caught, her energy and ability to connect is unparalleled. I always think about that scene in Oceans 13 where George Clooney is caught by Brad Pitt drinking a bottle of wine, alone, watching Oprah with a hint of tears in his eyes. In Pitt's attempts to rob Clooney's manhood from him...he gets caught up in the episode and his eyes well up. Great scene and so true.

A subject near and dear to my heart is of course Diabetes. You can imagine the excitement about someone like Oprah taking on the disease and making it relevant to the masses. She had her usual panel of energetic non-doctor doctors...meaning the ones that remove the white coat and connect with people (imagine that). They focused on the sensational and horrifying aspects of lack of control, showing amputations and other stuff, naming diabetes as the "silent killer". Okay, cool now everyone's attention has been focused....

Now I have to disclaim that I am absolutely in the minority of the populous by being type 1 diabetes centric. I manage one on a day-day and night-night basis. 90% of the diabetics out there are type 2. So of course mainstream media will try to communicate with a 90% market share vs. a 10%. That's just good business. Oprah's show is a business, with all of the philanthropy and connection that she brings, it's a business that makes money, freaking gobs of money. Type 2 diabetes will be the single largest financial burden on the planet (not just the health care system) in history, and that means that smart companies will be seeking ways to capitalize on it, we can only hope with good intentions. The most motivated customer is someone that has something to lose, exponential motivation when a life is on the line.

I wanted Oprah to clarify in the episode that:

- Kids get type 1 diabetes without any opportunity to stop it. Their own body (pancreatic islet cells) fails them.
- Adults get type 2 diabetes having ignored 15-20 years of preventable lifestyle habits. They failed their body. (in most cases anyway)

I'm asked on occasion, which means it's thought even more that between the ages of 0-8 months, we fed Cadence too much sugar and therefore she got "Diabetes" at 8 months old. It's not the fault of the person asking, it's just that the delineation between the two types is not made clearly enough, even by our own advocacy groups. The greatest disservice to type 1 diabetics was that we didn't get a cool and unique disease name...like "pancreatic insufficiency" or "islet apathy" LOL, I like that one.

Oprah and Dr. Oz, in my opinion, covered Type2 diabetes very well but didn't seperate the types properly, but the message of the show was a good one, and that is prevention is the key to save lives and lightening the immense impending health care system pressure from diabetes in general. When they talked about "warning signs" one of the top 5 was neuropathies, which are typically a late stage complication. What was left off the list was these 3 things (for type 2's):

1. Poor dietary habits - everyone who eats a big mac knows they shouldn't.
2. Poor/lack of exercise
3. Overweight.

How do those get left off the list?? The three silent but OBVIOUS symptoms aren't talked about??

I also wanted her to clarify that a 2 year old with 65-75 years of Type 1 diabetes expense, as much as 1000.00/month, may be as expensive to the system as type 2 diabetes. I don't know if someone has looked at the numbers but I bet it's close, but it wasn't touched upon. Dr. Oz said, with type 1 there's nothing you can do to prevent it, but there's alot of treatments for it....he should have said but why aren't these preventative measures funded and supported? Only outcomes, PREDICTABLE, expensive, and inevitable outcomes from the disease are funded and supported.

From a health care system standpoint, there has not be a death recorded from diabetes since the mid-70's. It was taken off of the list of possibe causes of death. Diabetes doesn't kill people, the complications of the disease do. Want to know the local irony of that policy? Preventative measures for type 1 diabetes (needles, pumps, insulin, test strips) are NOT covered in our health care system! The financial burden for control is shouldered by the caregivers based on their financial wherewithal. Treatment for severe retinopathy, neuropathy, organ failure, obesity, etc...are covered by the system! Talk about a band-aid for a bullet wound. If diabetes was labelled as a fatal disease, more might be available in advance of the inevitable.

Progressive thinking by governments about funding truely preventative measures for all diabetics (supplies for type 1's, fitness and lifestyle for type 2's) would save the health care system TRILLIONS. As it stands now...the deck is stacked against diabetics to fail...whether they had a fighting chance to avoid it or not.

I thank Oprah and Dr. Oz for doing a decent job of covering the topic, most of all bringing awareness, but I hope for a part 2.

Silence is deafening.

Every parent tells their kids not to cry. "stop crying, stop your whining, grow up, etc"

Perspective is everything, we don't see what not expresssing emotion in a child actually looks like.

I did today.

There is a saying that the "silence is deafening". A useful saying to describe how the sound of silence can create an avalanche of chatter in everyone's self conscience, the deafening roar of self doubt that comes without the release of sound and word. A weakness of a social organism is that without constant communication or environmental stimulation, we must face the fear of our own inner voices.

Today, Cadence had her A1C testing, Thyroid testing, and Celiac disease testing. These are all done by drawing venous blood from the patient and running a series of tests. Since Cadence was diagnosed, she has a white-coat anxiety. She may not consciously remember her diagnosis but certainly there's part of that experience that must subconsciously stay with her. The phlebotomist wrapped both arms looking for veins while Cadence looked on, sitting on my "wap". With the decision that there was not a good enough vein in her arm, they decided to go into her hand for a vein. With shooken hand she moved the needle through the skin and into the tiny vein, the entire time, Cadence watching silently, me holding her tightly. As she moved the needle back and forth, up and down, round and round looking for the blood, Cadence's eyes never moved from the needle...tears at bay. She shook on my lap and her face turned purple, shaking with incredible power, I could feel the sweat forming on her back against my arm...but she wouldn't break. True courage beheld. The silence of her courage was DEAFENING.

When the phlebotomist decided that it was not going to work and they needed to go back to the arm, Cadence looked at me and said "I don't want another poke", her hair wet on her brow. All I could say is that "I know sweetie, it'll be over soon". The second needle, plunged into her arm...she held fast for a few seconds, shook, turned purple and then lost it. Crying, sobbing, writhing against all while the 2 phlebotomists now hold her arm firmly to draw the vials. Cadence never took her eyes off of the needle, fixated upon the blood coming out.

Once it was finished and i had her settled, she looked at me and said "daddy, I have to use the potty"...as if she felt guilty for violating the no-cry principle. She sat there, holding my hand, and spoke quietly about the jelly beans she gets for successful potty excursions. Almost like she didn't want to bring up the "poke", escape from the environment and focus on jelly beans. We could all learn how to deal with stress through a toddler.

Parents often wish for silence from their kids....we should all take a moment to determine how loud that silence actually is.

b.

Cute diabetes moments...

I woke Cadence up at 4am this morning with a 3.0 blood sugar. This was after a juice before bed that we only covered half of the carbs for. New infusion sites these past few months, one low day, one perfect day, one high day...rinse and repeat.

So, I took Cadence to the driving range for the first time yesterday, with her new set of US Kids golf clubs, including the BIG DOG. She probably bashed her way through a large bucket on her own before stating "time to go home dad." My Mom was with us and bought her a Big Dog headcover for her driver (Big Dog). So when she finished her juice at 4am, we had to make sure the "Big Dog" was under the covers with her.

Cute.

B.

Moral responsibility or occupational guidelines - the dilemma of action

Who let it be March already?  Woah.

Sorry to my readers for the lack of posting, I'd like to come up with a bunch of excuses but truly it's just out of sight - out of mind with a pinch of laziness that brings me to my first post in 60+ days.  Nevertheless, off we go...

We took a trip to Phoenix in January to visit the grandparents.  We ended up in the Emergency room the 2nd night we were there with Cadence vomiting profusely and her sugar plummeting despite our best efforts.  Ambulances, Sheriffs, flying down the highway to the nearest hospital was not the way we intended to begin our vacation obviously.  We were treated well and by the next morning, Cadence was doing much better with some IV fluid in her system.  I had to use glucagon for the first time since her diagnosis as well.  Glucagon is an emergency measure for diabetics.  It's an injectable substance that will cause the patient's liver to dump emergency sugar storages into the blood stream.  It's designed to be used in a non-responsive diabetic. 

We got home at 7am, fell  asleep, woke up about 9 am and we were all tired and hungry.  Cadence had a normal breakfast for her, we bolused her the same as we would for any other day....food and carbs in a diabetic usually means they need insulin.  As we were heading out to get some errands run, I looked over at Cadence and she didn't look right, checked her blood sugar and she was in the 2's.  After a juice, fruit bar, banana, and 2 more glucagon shots she was still sitting at 3.2mmol/L and lethargic.  We were scared and out of glucagon.  We raced over to Wal-Mart to get some more of the glucagon.  

Cadence was slumped over in Nic's arms, her sugar falling again.  We ran into Wal-Mart right to the pharmacy.  I announced to the pharmacist, "my 2 year old daughter is a type 1 diabetic and his having an insulin reaction, I need glucagon for her to bring her out of it."  The pharmacist looked panicked and went over to her the manager of the pharmacy to find out where it was.  He shook his head and walked away (no I'm not kidding) and the pharmacist came back to us and said, sorry we can't do that for you without a prescription.  I showed her the diabetic letters that we travel with, the almost empty container of glucagon, and Cadence's pump.  Meanwhile Cadence is slumped over in Nic's arms  drooling on her shoulder, sugar sitting just below 4.

I said to her and loud enough that the manager would hear, "would you take a prescription over the phone from her endocrinologist, we need this for her!"  He said yes, so I phoned the Children's hospital on my cell and got a hold of Cadence's endo.  After a minute or two on the phone, he hands it back to me and says (no I'm not kidding) "I can't take this from a Canadian doctor, good luck."  And walks away with my 2 year old slumped over on Nic's shoulder.

So...what would you do in his position?  Would you leave a 2 year old little girl to the mercy of her disease in order to follow your protocols or do you make what seems an obvious choice to help her? What if you thought your job might be in jeopardy?  Could you justify to an employer that the patient was in obvious distress, proven to have the condition stated, and needed help?  Does a good samaritan action override a "policy" designed to cover your own ass?  It's not an easy question.  I told him what I thought of his decision, as did his staff but in retrospect...it had to be hard for him, at least I hope it was.  If it were me, I'd break the rule to help a child in need but I come at that answer with a significant amount of bias.  At very least I'd offer options "I can call you an ambulance" would have been a nice gesture vs. "good luck".  

Now the question needs to be answered, why were we not on our way to the hospital in the first place?  Ah, another ethical question that I have asked myself.  The issue was that our travel insurance would not cover us for a second visit for the same diagnosis.  Meaning that if we showed up at the Emergency room again for a diabetic insulin reaction, we would be uninsured. I don't have 10,000 or so to cover an ER visit in the US.  So my judgement call was that if we can keep her sugar above 3.0 and she's not vomiting up the carbs we give her, she's would not be in immediate danger.  What would you do?  Did i make a decision that possibly put Cadence in jeapordy even though we were monitoring her extremely closely?  Does our background as medical professionals help us in reaching this decison?

We went to the ER to get a prescription from the attending doctor for glucagon, while Cadence slept in her car seat in the parking lot, Nic checking her blood sugar every 20 minutes to make sure she stayed above 3.0mmol/L. If we bring her in to the ER, they admit her.  I tore myself up deciding if I was making the responsible decision.  I filled the glucagon prescription at the pharmacy and never had to use it.    It still sits in the fridge or the diaper bag just in case.  So, I was vindicated, I made the call that saved us money and didn't jeopardize Cadence...or did I?  

These are examples of no-win situations, thankfully the decisions we made produced a favorable result.  Fodder for discussion though and we chat about it often.

As a side note for parents of and diabetics travelling in the states.  Make sure that you have a plan for an emergency.  We have  standing prescription for Cadence in Phoenix now for glucagon, so if we are ever down there and need a backup, we can get it.  If you're in Mexico or something like that?  Make sure you have enough emergency supplies to see you through it.

B.

Milestones.

July 19th is Cadence's anniversary.  It was one year ago today that my little girl came within seconds of losing her life, and started a brand new one at the same time.

I've been up since 4am just thinking about the day we had last year.  Cadence had come down with a little flu the night before and was feeling off that morning and gradually seemed to 

be getting a bit worse.  I got home at about 10:30 as I was supposed to

 go and play in a Cancer charity tournament that day and Cadence was getting a bit sicker.  Nic and I are both doctors, we knew it was just the flu...and in an 8 month old it always seems to be worse than it probably is.  We covered our bases, even called health link to make sure we weren't missing something.

A mother's intuition really is the sixth sense.  Nicole just knew that something wasn't quite right with Cadence.  Yeah it was the flu but there was something that she wasn't comfortable with.  So, off to the Medical clinic we went to get her evaluated where we met the worst excuse for a physician (and perhaps the best testimonial of a broken health care model).  He walked into the room, never looked at the chart, never said hello, never even asked us a question.  He took one look at her and said "this child has pneumonia and needs an ambulance."  To which I replied "do at least want to look at the chart and find her name first?"  Nic was crushed and I was livid with this clown and unfortunately made sure he knew that I was unimpressed.  I carried Cadence out of the clinic and put her into the car seat, the medical receptionist from teh clinic came out after us and yelled in the parking lot (and no I'm not kidding) "the doctor told me to tell you that you are risking this child's life by leaving!"

Off to the children's hospital we went from there, I was seething mad and Nicole was very distraught and while we zipped down Crowchild Trail, we didn't notice that Cadence was starting to go unconscious in the car seat.  When I pulled her out of the car seat and hustled to the Emergency room entrance, we knew things were not going well, Cadence was immediately brought into the trauma room.  12 or so Doctors and Nurses worked feverishly to save her life.  They tried to get an IV into her but Cadence was so dehydrated that they were unsuccessful in her arms, legs, groin, and armpits.  Her veins had gone flat.  They then shaved her head to try to get a vein on her skull, with no success.  I was then asked to help hold her down as they took a drill and proceeded to drill a hole into her tibial bone marrow.  She writhed in my hands as I tried to tell her it was okay.  I'll never forget the sound.  The pumped a number of syringes of saline into her shin/bone marrow to begin the rehydration process and Cadence slipped into a coma that would last 4 days.  An 8 month old should not have to undergo something like this.

They wheeled her to CT scan to find out if there was any irreparable brain damage as the doctor talked to us in the hallway.  "It's diabetes" he said.  We were stunned, "in an 8 month old??" I replied, "it can't be, there must be something causing it."  We walked to Cadence's next home for the weekend in the intensive care unit, spinning from the events of the last 2 hours, only then realizing that we had left the front and back door of the house wide open on our way out.

With diabetes, Cadence's own immune system killed the cells that provide her with insulin.  Without insulin, the sugar that comes from the food (breast milk in her case) can't cross over from the blood stream to her muscles and organs.  The blood becomes very concentrated and through the process of osmosis, pulls water out of the cells in the body to the blood stream to balance the mineral : fluid ratio.  Cadence then pees out the excess fluid and the vicious cycle begins.  Her body begins to shut down without sugar supply, the endless supply of which circlulates through the blood stream, leaching fluid from the very cells reaching for sugar.  Without insuling, they are ignored.

The next 4 days were a whirlwind of emotional and physical drain as we watched around the clock for Cadence to show some signs of recovery.  The nurses had never seen a worse case of diabetic ketoacidosis nor had they ever seen it in an 8 month old baby.  Seeing my  little girl hooked to tubes and IV's, unresponsive...essentially dead...scarred me forever.

Cadence came home with us on Tuesday, 6 days after our world just about crumbled.  She was sent home early as she didn't respond well to blood checks, with lancets designed for 5 year olds, nor the veinous blood draws every 4 hours where I had to hold her down as she soiled herself in sheer panic.  We feel blessed that she will never remember the experience, it's our burden to carry that for her.  Now, with 15-20 blood checks every day and 6-8 injections, we resumed our new life at home, we fully comprehend how quickly life can change now.

In the last year we've gone from parents of a new baby girl, to nearly childless, to now the day to day life savers of a diabetic baby.  We've gone from injection therapy, to insulin pump therapy, breaking new ground for the diabetes health care team at the children's hospital.  I have become an insulin pump trainer and advocate for the therapy.  We have taken her disease from being a sad story, to one of inspiration for many families.  We have continued to make good on our pact to make Cadence's diabetes a positive in our life, not a negative.

We feel that the 2nd year of diabetes will be one of many challenges, but also one of self-discovery for Cadence.  She will understand at some point this year that she is special....she is different.  I  am committed to helping her understand that the difference is a positive one.  Diabetes is the one fatal, lifelong disease that the bearer has the opportunity to control.  After a year, we look at the next years as an opportunity....not a curse.

b.

D-Mergency (part 2)

We almost made it a calendar year between hospitalizations.

It's been a very hard year for our family, yet a year with great successes.  We went from a Coma, to an infant on 8 injections a day, to a pre-toddler on an insulin pump (shaking the diabetes establishment in this city) 6 months after diagnosis, and recently registered a lower, "absolutely amazing" 7.7 A1c for Cadence, only 3 months after her pump start.  But you still can't predict the d-mergency.  Nicole and Cadence went to Ontario to visit Gramma and Grampa, the first day they were there, Cadence had to be taken to the ER for an IV as vomiting and flu like symptoms threw her blood chemistry for a loop.  I was in San Francisco, standing in the parking lot of the Olympic Club when I got the text message saying that Cadence was in the hospital.  Everything that I felt last July came back to me as I read the words and I crumbled for a moment.

For diabetic children a trip to the ER for an IV is a part of life and it won't be the last one from what we're told.  It turned out to be a positive as Cadence was feeling much better a day later.  The fact remains that we strive to never have to be back to the hospital with Cadence and find it so ironic that our goal as parents, before diagnosis, was to never need emergency care for her.  The irony now is that we depend upon it for something as simple as a stomach flu.

Our one year D-versary comes up next month on July 19th.  We plan to make it a day of exceptional fun for Cadence and put last years experience far behind her.  We work everyday to make diabetes a positive in our family's lives, not a negative, and encourage other families to ensure that diabetes is not their disease but their opportunity.

b.

D-mergency

Even when I tried to put in the title, the blogger program changed the first letter to E.  Nobody understands :)

"Captain, we've got a D-mergency....Ketone field dead ahead, take evasive action"

The D-mergency is something that diabetics and their caregivers know all too well.  It's sort of the secret handshake that you'd rather not know.  The D-mergency is often associated with Murphy's Law as well.  We were at a birthday part last night for one of Cadence's friends.  First birthday party with kids, cake, pizza, and soda.  We were so excited to let her experience these foods for the first time and to see the power of the insulin pump in terms of dealing with these carbs.  We were all set, pump was going, infusion site did fine all day, as soon as we hit the front door apparently the infusion site decided it was finished...or Cadence's body felt that she was finished with it and it scarred over.  1 hour into the party before any food was put out she hit 20.3 on her meter, 4 times the normal range.  She felt like (or so I perceive) she just downed 5 big gulps.  She played quietly and jumped anxiously everytime anything around her made a sound, cried uncontrollably at the site of a party hat, weird stuff.  Back to Murphy's law...the one time we leave the house without a backup syringe/insulin/infusion set...is when we need to use it.

So, as the pizza was unboxed and after 2 corrections Cadence's sugar only climbed, we had to make our exit, take her away from the party to go and try to bring her sugar down.  We were all bummed out, it was a quiet ride home.  After we put in the new site, gave her a big bolus of insulin, her sugar started dropping and we had a little party at home.  Cadence had a taste of some frozen yogurt, danced to some music, and hit the sack a little later than normal.  Nic and I got ready for a long night of fighting the lows often associated with a high correction and a new infusion site.

We know the secret "D" handshake and every day wish that we didn't.  The trick is to make every attempt to use it as little as possible and make day to day life and normal and vibrant as possible.  Diabetes is a life ending disease without an obvious disability or a cure.  A great quote I read yesterday rings so true "you don't get time off for good behavior", you just have to try to keep the ship headed in the right direction.

For an awesome perspective on diabetes read this article on Jake Cutler, quarterback for the Denver Broncos.  We are officially Bronco fans now.

b.

The comfort of a needle...

An interesting revelation was had earlier this week.  Cadence has had a cold/ear infection/ eye teeth coming in...you name it, this week has been one for the books.  Lying in the weeds, there is always the "D" and the sugar irregularity that comes with illness and irritability in a toddler. Is she high, super high, or low?  Those are the questions we ask.

It brings me back to my original point about revelations.  Parents of diabetics...scratch that...diabetics in general should not be too quick to switch to pump therapy, meaning that spending the first few months, let's say 3-4 months if we need to pick a number, is very important.  An about face?  No, just a realization that the time that we spent jabbing our baby with 6-8 needles per day, soothing the crying afterward taught us how to be strong, resiliant, and competent diabetic caregivers.  We have a keen understanding of how insulin works on our daughter, we are not afraid to stick her with a needle if needed, no matter how hard she fights.  That's a unique skill and not one to be underestimated.  Not convinced?  Ask someone on the street if they would be willing to give you an injection, would you trust them to do it for one?  Number two, would they be willing to give you a lifesaving injection?  Social experiment time.  

I know from our situation, the answer to the latter is probably not.  We have people close to us that refuse to learn how to save my daughter's life.  It makes you scratch your head asking why, but then again perhaps it is just how anyone else would behave.  Who wants to give a needle to someone?  Is it unreasonable then for us as parents to ask for help?  Is our wish for a couple hours off of diabetes forcing someone else to enter into an extremely uncomfortable situation? Are we being unfair?

So, the pump is absolutely awesome in the sense that it takes away the injection side of diabetes, which solves the social experiment.  It can provide very finite control, and offers immense lifestyle flexibility.  We celebrate those parts of it every day.  I hope that most Type one diabetics, when they are ready take this step toward normalizing and enhancing your life.  What the pump adds however is the uncertainty of the equipment, did the infusion site work, is the pump working properly, is there air in the line (we had to prime out bubbles twice today)?  Combine the unpredictability of diabetes and you can quickly begin chasing your tail if you don't remain centered.  With a needle, you always know the insulin went in.  

That is the comfort of the needle.

b.

The Last Shot.

I can't believe we're here already.  March 30th, the eve of a very fresh start for Cadence.  We start insulin pump therapy with Cadence as of tomorrow morning.  From here till....well....who knows, Cadence will have the pink Animas 2020 saving her life everyday.  The pump will be attached to her 24/7 delivery micro amounts of insulin.  We can push buttons to deliver higher amounts for food or highs, suspend delivery if she's low or sick.  It's very exciting to have the potential for incredible control of her diabetes.  For the last 7 months, we give her a bunch of insulin and hope that she takes in enough carbs to cover the insulin and also that we've given her enough insulin to cover the breast feeds...let alone trying to figure out how many carbs are in the milk and how much she takes in.  Our A1C is really just an average of the highs and lows.

I  have 3 syringes left to give her, and then there's no more needles.  That point is just so valuable to me, I can't even describe it.  I came home the other night from work and she was happy to see me but ran away because she knew it was time for a needle.  I can't even tell you how hard that is for me as a dad.  Nic and I are so happy to be free of having to stick Cadence with 8 needles a day...for now.  I remember the first one I gave her last year and I almost broke down doing it, it's easier to do now, I'm better at it.  The hardest part is that she cries a bit, holds the injection site, and gives me the ultimate hairy eyeball.  So I say (to a baby) "sorry Buttons."  I'm sure she's saying "whatever dad, I'll get you when I'm 14."

The stomach bruises suck.

A quick calculation will show that Cadence has had diabetes for just over half of her life, she is now 17 months old.  She has endured approximately 1856 needles and nearly 4000 blood checks.  The little girl is tough as nails and she amazes me.

So, today is kind of like Christmas eve the anticipation is palpable but everyone in our house has a sense of confidence and anticipation for this next chapter in her life.  

Until tomorrow,

Brad.

Dexcom - day 5

We are dexcom day 5 with Cadence.  What a great little device, which has already paid for itself in spades after a scary low on the weekend.

We were cruising through a showhome in our 'hood looking to

 steal some decorating ideas for our little hacienda.  Cadence was ripping around the house, up and down stairs, jabbering at all the other people milling about in there on Sunday afternoon.  We heard the chirp from her Dexcom CGMS and the warning that she was dropping low.  We sort of expected her to go down a bit as a result of her activity, so we casually picked her up, went over to the kitchen table in the showhome and did a quiet fingerpoke.  The number on the blood glucose meter said 2.2 mmol/L (35 md/dL).  That is a severe low and a very dangerous one for a 15 month old.  The worst part is that she had no idea...  confirming our suspicion of "hypoglycemic unawareness".  Cadence doesn't feel her lows, where as most diabetics feel horrible during a low, it's their safety net.

So, I sprinted out of the showhome to grab whatever carbs we had from the car, while Nic put Cadence on the boob.  I grabbed fruit bars, soy milk, anything really, and ran back into the showhome to the surprise of the salespeople there.  So with about 25-30 people moving in and about the showhome we treated Cadence's second lowest glucose reading since her diagnosis.  We had carbs, a sock, and bloody test strips layed out over the kitchen table...in the middle of the showhome.  Sometimes you just have to make due LOL.  Once recovered, we continued the tour through and upon exiting she showhome manager says "that must have been some diaper change!  By the way, is that a GPS on your daughter?"  :)

Now, onto the Dexcom.  What a great little device, and proven so in the above story.  We are on day 5 and the finger stick readings comparative to the dexcom trends are very close if not bang on.  If there is a difference, it's usually as a result of taking a reading at the peak or valley of of change in glucose levels.  Otherwise, the dexcom is usually well within 10 points (mg/dL) of the meter reading, a huge plus.  With the minimed system we had values that were absolutely nowhere near what her blood glucose reading was, even at times of stable sugars.  So the question begs:  What's the point on putting a "real-time" blood glucose reading on your display if the user is amazed if and when it's accurate?  The trending bars are invaluable though.

We are still undecided as to which technology we are going to invest in but the Dexcom appears to be a better product.  If only they could pay one computer programmer for 3 hours work and make some rate of change arrows (like minimed's) and have an option to use mmol/L or mg/dL, it would be the giant killer of Minimed product.  For the price of these "next generation" units it's amazing that a handheld poker game from the airport has more display and computing capability than these devices.  We're going to give the minimed another shot next week though and see if it can stand the test.  

With Cadence's hypoglycemic unawareness, it appears that we don't have much of a choice of not going with a CGMS.

The Dexcom experiment has begun

I was able to secure a Dexcom 7 unit during my last trip south.  We have engineered the rare opportunity to test both the Minimed CGMS system and it's competitor Dexcom.  Dexcom is not available in Canada unfortunately.  Through several conversations with many people in the US  I was able to get one for her.

A couple problems with this system already is that it still is only capable of communicating with the OneTouch Ultra meter which IMHO is a POS.  Further it needs to communica

te through a cable.  Why this was deemed to be a good idea vs. manual calibration with whatever meter you like to use is beyond good reason and stinks of corporate collusion between Onetouch and Dexcom.  

Dexcom has plans to change this but it hasn't happened as yet.  Also, the Dexcom CGMS system was designed only to use the US mg/dl scale and cannot be programmed for

mmol/L, again the rep has said this is to be updated soon.  

I greatly appreciate the 7 day wear and smaller needle insertion size (26 gauge Dexcom vs. 23 gauge Minimed) and the insertion of the Dexcom was definitely easier with Cadence.  When we did the Minilink sensor Cadence cried hard and grabbed at the area for a few hours afterward, anytime we tried to inspect the area she was quite upset by our efforts.  The Dexcom in

sertion however was absolutely easy, no tears, completely unbothered by it, and in fact immediately after sat in her highchair and had dinner, sitting on the sensor.  Pretty amazing difference and definitely a +1 for Dexcom.

The insertion device is good, I would say a bit better than the Senserter (Minimed's) but the sensor latch/tab...the little doo-hickey to snap the transmitter in place is goofy in the way it must be broken off.  Cadence, didn't like that part to be sure.  Both units, Minimed and Dexcom, could be greatly improved...easily.

We are in the middle of the 2 hour calibration period and will report more tomorrow once we see readings.  

so far so good!

brad.  

P.S. - I find the google ad beside this post about how to reverse your diabetes oh so comical...if only :)

Gadgets rule - The Continuous Glucose Monitor

Really interesting last few days. We finally generated enough courage to put Cadence on the Medtronic Minimed Continuous Glucose Monitor.

The CGMS system is designed to give "real-time" reading of Cadence's blood glucose readings. The problem is that it reads the glucose content of the interstitial fluid, the glucose meter that is used for finger poking measures actual blood glucose. The interstitial fluid is about 15-20 minutes behind. This may not seem like a bunch of time, but it does make a difference.

This little do-dad has a huge scary needle for insertion. In fact it took us 4 days to gather enough courage to do it. We finally decided that yesterday was the day. We numbed the insertion site with Emla cream, bent her over and using the "senserter" I jabbed the 23guage needle into her butt cheek....and it didn't go in...crap. Blood came out though and the crying ensued. A little panic by the parents and we decided to tray again. So, we grabbed the senserter again, reloaded and into the flesh we went again this time with success and actually no bleeding.

The readings yesterday were all over the map, we had a significant low yesterday afternoon that the CGMS completely missed. It did show a large trend downward though, so we had an idea that it was happening and that seems to be the value in this device. You can't trust the number and you're happy if it's close but you can watch to see if a trend is developing instead of finding out what's happening late.

We've only been hooked up to this thing for 24 hours now but I can already say that it's really a valuable tool in terms of seeing trends. The problem with point in time blood glucose monitoring (finger-pokes) is that you have an absolute value but no idea in which direction and how fast that value is changing. We did a poke with Cadence yesterday and she was 11.8, relatively high but the CGMS monitor showed a significant downward trend. Why is this important? Well, she was heading for a nap, if we had given a dose of insulin prior to that...the low would have been severe. Without a correction, she went down to 2.9. Now mind you, the CGMS missed the low but showed us it might be happening. We did a fingerpoke and caught it before it was too severe.

The big question is: Is it "WORTH" 6000 dollars a year....that's one that's hard to wrestle down.

I ordered the Dexcom 7 competitor unit last night as well to try it out. Many of the CGMS debates out there minimed vs. dexcom are based on an insurance coverage mindset of which we don't have. That puts us in a situation of being able to decide between the two based upon their merits.

Overall, very interesting experiment thus far.

b.