Day 6 - Diabetes Snapshots

For a glimpse into our lives, I decided to tote my handy Kodak around with me for the day and wouldn't you know it... I ended up with a compilation of our 5 previous topics:

• Today was a typical day (typical Saturday anyway)
• I treated a low
• We hung out with some supporters (Mom, sister, EMTs, Police Officers from a number of forces)
• I chose to carb this morning with a bigger snack because I knew it was going to be a busy day
• We were moving all right!  We were all over the place today.

Of course we started our day with a BG check.  He was running tight throughout the night but we didn't need to correct either way - just a lot of checks (I woke up in a panic at about 2AM believing I had heard my wife say he was 1.5 (27) - it was just a dream, thank God).

After breakfast (oatmeal and a glass of milk of course) we played a little Mariokart.  As much as I'd like to see him go through with his current career plan "I to be a doctor and kick diabetes' butt" he says (which brings a tear to my eye each and every time), I'd be ok with a NASCAR driver too - or both.

This morning he had a larger than normal snack (20g): a large banana and a cheese stick to see him through until lunch.  We did two checks between snack and lunch and things were in the green (9-10 / 162-180)

It was a beautiful day out today so we decided to head off to the park for a little play before running errands.  One of Jonathan's two favoured modes of transportation sans chauffeur is his backhoe power-wheels - Scoop from Bob the Builder.

I completely forget to take pictures of any other activity at the park, but the swings are BY FAR his #1 favourite.  He would let me push him on these for hours.  He met a nice young girl and they started to hit it off, but then she had to pee so her dad took her home.

We have been on a mission.  These special Jammers have only 2g of carbs.  They are the same convenient packaging as the normal type so no packing water bottles and portioned powder, just toss the drink bag in his lunch and he's good. - Getting harder to find every week.

Jonathan and I usually do something just the two of us on Saturdays around lunch time since mom and sister are at gymnastics.  Today we went to McDonald's for another favourite.  Lo and behold - 8.6 (155)... Nice!

Jonathan in McFry Nirvana

Playing a little Came Cube soccer in the Playplace.

Everyone's is probably a little different, but you can probably guess where this is ;)

Off to the mall for a little surprise for Jr.  It's "emergency week" and pretty much every force in town has made an appearance.  Jonathan's JDRF Bag of Hope is still a little too big for him and too small for me, so we take turns carrying it - it holds his necessities less the scale.

We started Jonathan's adventure on one of our city police motorcycles.  He is fascinated by pretty much any motorized vehicle of any sort, but bikes are one of his faves.

Royal Canadian Mounted Police cruiser - despite the belief held by some, south of the boarder, that Mounties only ride horses and work in snowy regions.

It's funny how the one row forward in a cruiser can be the difference between pride and disappointment.

Little big man looking tough in front of the not so little K9 unit truck.

With legs that short he won't be moving the dogs anytime soon.

This is the first, and I pray the last, time he is in the back of an ambulance.

I found it kind of funny and angering at the same time: every kid to venture into the ambulance was given a treat - rockets (basically miniature sweet-tarts).  On one hand they're trying to be nice to the kids and they don't know Jonathan's diabetic (and his bracelet is under his long sleeve), but on the other hand, you'd think they of all people would be aware of some of the conditions people have.  I decided to let it slide.

Well I knew we were having fun and excitement tends to drop his blood sugar, but he was so calm and reserved the whole time that I didn't really suspect.  It was just a fluke that I checked because I wasn't planning on a snack for about another half hour, but at 1:30 (2 hours after lunch)... yes that says 3.4 (61).  I guess I should have let him eat the rockets.

I've never used ice creme to treat a low before, let alone a cookie dough blizzard, but it worked.  This is a large blizzard, but I put a bigger dent in it than he did, and in 20 minutes he was 10.3 (185).  He should be good till dinner, but I'll check in about 90 minutes or so anyway.

See Jonathan.  See Jonathan with his cool new shades.  See Jonathan with his cool new shades popping out of the sunroof in my Magnum.  Well nothing else today is going to top cop cars, ice creme, and riding parade style, so I'll hit publish now and go play a little Mariokart with future Dr. Andretti.

Until tomorrow...

Day 5 - Let's Get Moving

Activity is one of our key variables and one of the most difficult to quantify.  Aside from adrenaline increasing blood sugar, activity can reduce it.  This is one of those things that we just have to keep an eye on and roll with it.  Jonathan is a fairly active kid, he doesn't sit in one place for any great length of time other than early morning and maybe late in the evening, usually he is go, go, go.  This is helpful in a way as his ratios are set up based on periods of observation and as such have some level of activity built in.  A little less activity and he'll trend up and we can correct with insulin, a little more activity and he'll likely not dip too low.  There are days however that are filled with running and jumping and rolling and sliding and potentially low numbers.  We do reduce bolus at the meal before planned high activity levels, but sometimes it's not planned.

I've mentioned it before, but it's important to us so I'll say it again: Jonathan is a 4 1/2 year old kid first and a diabetic second and therefore play time usually trumps D fears.  Sometimes this means that I have to do extra checks on extraordinary days and I have to plan for extra snacks to be available from him, but it is what it is.  The surprising thing is how fast he can drop when he's more active than usual.  Between breakfast and lunch or lunch and dinner he most often still has insulin from his bolus on board and that is of course playing a role but I've seen him go from 16 (288) at meal +2 hours to 6 (108) in 30 minutes and I can take a SWAG as to where he would have been in another 15.

Jonathan is at a point still where he either doesn't recognize dramatic changes in blood sugar or is not sure how to express it.  Above 3 (54) he is non-symptomatic so we really have no choice but to test more often.  Sometimes I feel like a human CGMS but being his dad, I do it happily and without hesitation because just as important as his health and well-being is to us, also being a kid and having every opportunity that he should have is too.

Day 4 - To Carb or Not to Carb

To carb, or not to carb: that is the question:

Whether ’tis nobler in the mind to suffer

The slings and arrows of outrageous lows

Or to take carbs against a sea of troubles

A little twist on Shakespeare's soliloquy, probably the most famous speech in the English language, is the first thing that came to mind when I started to think about today's topic.  I have no doubt about it, carbs can mean life; to be.  Aside from treating lows, as we wrote about on Thursday, carbs are essential fuel; especially for growing concerns (aka our children).  Although most of my recent encounters have been with families of diabetic children, I have met a few adults who have managed this for years.  For the adults there seems to be, not so much a divide, but rather two schools of thought on the subject with some common ground.  As far as the kids go though, every doctor, nurse, nutritionist I've spoken with seem to agree: as long as he's growing, he needs carbs.

It makes sense to me.  Every science and biology class that I took at least touched upon the subject and identified carbohydrates as a key source of energy.  From everything I've read about healthy, balanced diets, carbs are an important component in varying proportions depending on stage of life.  Specially focused diets and personal choices not withstanding, it is our opinion, and in agreement with the clinic team, that Jonathan needs carbs to develop and grow.

So to answer the question: Carb.

That being said, to carb is to count.  For meal time there is no leniency, every carb is counted and factored in.  One of the drawbacks of injection vs. pump, is that the finest tuning is to 1/2ū, but there is a bit of a way around that - adding or subtracting a few carbs to get the denominator to the right number - not perfect, but it helps for consistency.  We have not picked any specific diet or meal plan but rather opted for basic healthy choices.  For breakfast, he most often prefers oatmeal and a glass of milk (ok chocolate milk), occasionally Cheerios or toast with some fruit and milk.  Lunch is typically a sandwich, yogurt, fruit (strawberries), some sort of treat and depending on the total (we have to target 45g because of the fixed dose that the nurse gives) and either a Kool-Aid Jammer 10 (which is 2g), or some milk.  Dinner is any number of things, typical family fare - usually a meat, a vegetable, a starch, milk, and a dessert; occasionally hot dogs or chicken nuggets with fries.  Of course from time to time these meals deviate due to travel, special occasions and such, but at home/school it's fairly routine.

In addition to meals, Jonathan gets two snacks.  Mid-morning snack typically consists of a cookie (animal crackers or arrowroots) and cheese for 10-15g depending on breakfast BG and planned activity, and afternoon snack is a 14-18g variable - there's a snack box he gets to choose from.  Snack time is a little more liberal and is always open to changes while keeping a 15g target in mind and we tend to change things up on the weekend so that he doesn't get bored.  From time to time we face situations where something becomes available to him that is out of the norm; this ends up as a judgment call and is sometimes difficult.  When things pop up out of the blue we usually try to negotiate with him, but if all else fails one cheesy or one Skittle isn't going to do a whole lot of damage, but just one.

The big "To carb, or not to carb" questions in our lives center around what I call "heading down".  Heading down is an observed trend that if it continues could result in something bad before a scheduled meal or snack time.  This usually happens in the evening when I look at his Dinner#, Bed#, and Dinner+4hr#.  Those three pieces of data allow me to draw a line/curve that is weighed against the type of food he had and the evening's activity.  If I see that he's heading down steeply, I might give a small snack (5-6g) to help level him out.  If I see that he's a little tight but not necessarily something I'd typically correct I usually just end up checking him every 2-4 hours through the night and deal with a true low if it comes.  Sometimes this happens during the day when his activity level is higher, but we usually have a better handle on it as the ins and outs are more observable, night time is a more frightening because a) he's relatively still and it's not obvious why he's heading down and b) he not being observed like he is during the day and has no conscious knowledge of how he's feeling.

This is all part of our "new normal".  It's integrated into our lives and is done most often with minimal disruption.  It is the way it is, at least until after Sunday's topic isn't just a dream.

100 Posts of Meri

I got it, I got it!  Much to my amazement I finally won something, albeit to be re-gifted to my wife.  I must say though, short of winning the lottery, I'm totally stoaked about winning in the DOC - The nicest group of people that I've never actually met.

Thanks Meri!  I will watch it proudly.

Day 3 - My Biggest Supporter(s)

I love my team!  Aside from a few roadblocks we encountered initially with getting things set up at school, support is one thing that has abounded since day one.

My family of course is critical in the day-to-day.  I couldn’t do this alone and even though I get frustrated sometimes when things go awry, I know deep down that everyone in the house has Jonathan's best interests at heart and will do their part to make sure he's safe and healthy.  It's difficult to describe in words, but some days it almost seems like my wife and I are each one arm of the same body as we hand off to one another that actions taken to keep things on track.  Our daughter is an absolute sweetheart when it comes to this (other areas not so much sometimes), she demonstrates a sincere concern and caring for her little brother and is patient and understanding when he needs our attention or we have to deny certain things.  Jonathan is my superstar.  This is his cross to bear and he does so with a dignity and strength that amazes me every day.  He accepts that he has to be tested and poked, and he is understanding that sometimes there are compromises, trade-offs, and delays.  He's not always happy when things don't go his way, but for the most part he deals with it rather well.

Outside of the house, and outside of my line of sight, there are a number of individuals that play an important role in his day.  In the mornings his teacher is primarily responsible for him, and while she can't test or give insulin she has taken a keen interest since day one and been very active in monitoring him and ensuring that necessary steps are taken if there is suspicion of an issue.  Just before lunch a nurse visits him; usually the same one each day will come to check his BG and give him his NovoRapid, then sees him off to Latchkey.  At Latchkey there are a number of people that, like his teacher, are aware of his needs and have become adept at working with us to make sure that he's in check and gets through the rest of his day safely.  They school team has also done a fantastic job of letting him be a 4 year old kid first and a diabetic second which is also very important to us.

Two other important team members to note are my mother and our sitter.  Despite the attention and consideration that must be paid to D, we make it a point to not to let it gain control over our lives.  To that end, we still have two people that are capable and trusted who can care for Jonathan in our stead.  From time to time we do need to get away, even if it's just a few hours or occasionally for a night.  We lucked out with our sitter as she is not only really good with the kids, but as a second year biology student she has an acceptance and understanding of the need to monitor him, test, and if necessary give snacks - she keeps us informed via texts and we can send instructions the same way without any major disruptions.  My mother really stepped up and this all started.  She was the first one to ask for training at the hospital, the only one besides my wife and I that saw it through.  Although it took some time to get comfortable with everything, she now has the kids visit for a night from time to time and has so far successfully navigated the minefield.

Then there were the first ones to come to our rescue.  There is a group of dedicated professionals that we were introduced to during the first days after diagnosis.  The team at the hospital is amazing.  We have access to nurses (some of whom are Certified Diabetes Educators), a dietician who is also a CDE, pediatricians, endocrinologists (via our paed), social workers and children's life services people.  The 8-4/Mon-Fri schedule of the clinic not withstanding, I have yet to encounter a management situation they have not been able to help me through and If need be, the ER is the after-hours go to, but thankfully we have not been there since the initial Dx.  I have found them to be one of the most caring and supportive groups of people that I have ever met.  In hours we went from being total strangers to part of their "family".

Finally, but certainly not least, everyone here.  In this online community I've found a huge amount of support and reassurances that we are not alone, and that is a very powerful thing.  Coming here and sharing our adventures helps keep me sane (as close to it as possible anyway) and gives me a lot of good food for though… dealing with highs and lows, to pump or not to pump, living with D, etc...

It's hard to say who the biggest supporter is.  It really is a team effort.  While some team members have more knowledge about biology and medicine, others have more day to day responsibility, and some have a role isolated to a portion of the overall picture.  I can't pick one that I could do without as any gap would create an undesired challenge.  I would have to say that my biggest supporter is the team.

Day 2 - Treating a Low

OK, I'll fess up.  I threw together yesterday's post in a mad dash to get one out because in all the insanity of the weekend and getting back to the office after a week of meetings I totally forgot about this project.  So I promised myself I'd take a little more time today to be able to put some good thought into it.

I, probably like most people, would love it if there were a one-size-fits-all "how to" book for this thing.  We all have some similar tricks and tactics, but at the end of the day everyone is slightly different.  As much science as there is behind what we do, a great deal of it is still more of an art.  We begin to develop an intuition that guides our actions and can steer us in slightly different directions based one the subtle nuances of the situation.

In basic terms, low and danger are proportional.  The lower the low the more dangerous it can be, so the first thing is to be able to recognize a low.  Jonathan can be 3 or 23 (54/414) and he does not usually present any symptoms.  Once he gets to about 2.5 he starts to show, but I don't like letting him get that far.  Since we can't pick up on lows by sight, we vary our test frequency to suit the day.  While an average day may entail 5-6 checks, a suspect day might easily be double that if not more.

Once a low is determined, we most often treat with a fast-acting carb.  The easiest thing is juice.  The drawback to juice though is he loves it and once he has some he will want more.  Juice is our night time standard though as he can sip through a straw in his sleep.  We have a few cups left over that have the built in straw and I dole out juice and 1/4-1/2c servings depending on the BG#.  Apple juice and peach juice seem to work well and he likes them.  I prop him up with one arm and put the straw to his mouth while whispering in his ear a steady chant of "juice time, keep going, good job, drink it up…" and with about 20-30 seconds he's done and rolling back into his sheets.  The other reason I like this is because I can get a L of juice in a tetra pack that has about a 12 month shelf life and is re-sealable - no sense tossing half a juice box in the garbage.  Some of the day time favorites include, arrowroot cookies, fruit, or if on the go a sour crème glazed timbit (if you don't know what a timbit is, you need a weekend in Canada).  Of course candy is always an option and is on hand, but we'd prefer something a little healthier.

Thank God, and knock on wood, we've never had to use it, but there is also a tube of cake decoration (see The Kit).  If worse comes to worse and we don’t have glucagon on hand, we can put a dollop of cake paste in each cheek and rub it in for a quick sugar boost, but like I said, it's never come to that and hopefully it never will.

At the end of the day, it's whatever will get him back in a safe place.  Of course we have our preferred choices, but just about anything will do in a pinch.

After the fact, I try to look back and his numbers and see if there's a pattern - I find a lot of the time that lows follow a high and vice-versa.  It's possible that this is just a fluke thing from time to time, but odds are there is a probable cause to be found and a lesson to be learned and it is in that learning that we get better at what we do.  There will always be lows (and highs for that matter) no doubt about it, but we can work to minimize them.  Everyone is different and some will have more than others, just as unfair as the disease itself is, but sometimes we need to look back to move forward.

Day 1 - A "Typical Day"

Typical is a relative term.  After almost 9 months we've formed a bit of a routine.  Although we do deviate from the routine from time to time, the basic elements remain fairly constant.

Let's start at the beginning (wake-up time that is).  I hate my alarm clock with a passion.  It serves only one purpose and that is to disrupt my peaceful slumber.  The kids do that too, but at least they hug and laugh and give me those warm fuzzies.  Not the alarm clock though, with it's cold blue indignant stare; but that is where it starts.  Immediately after the alarm clock comes "What is Jonathan's number?"

Part of the routine is to keep a fairly regular meal schedule.  Breakfast is usually at 7:00 but can sometimes be as late as 8:00 if it's not a school day.  Lunch at school is at 11:45 and generally noon otherwise with morning snack 2 hours before lunch.  Dinner is at 6:00 on week-days and between 5:00-6:00 on weekends; afternoon snack is about half way between lunch and dinner.  At each meal time we check BG and administer insulin with a fourth injection of long-lasting at 6:00pm.  We check BG at his bed time, four hours after dinner, and anywhere from 0-5+ times between that dinner +4 hour check and the start of the next day.  That's typical.

Typical is not extraordinarily difficult once you get in a routine and have some time under your belt.  That being said, Saturday was a little atypical.  Jonathan's Journey held a fundraiser car wash hosted by one of the local Ford dealerships.  Breakfast started out as usual, but after that it was a crap shoot.  The weather sucked so he spent a good chunk of the day running around inside the service write-up bay.  With two boxes of donuts in sight, he was keen to get his hands on some sugary goodness.  We had quite a few people there and they are all aware of what the deal is (heck, they were there because of him) so we all washed cars and collected money, paraded up and down the street holding signs and BBQ's hot-dogs while keeping one eye on him.

For snack I gave him 1/2 of a plain donut kinda figuring that the running would need a little booster and of course an hour before lunch I had to decide if I should snack him again, and I did.  Good lunch number - phew.  The rain continued to come and go and the money making prospects didn't look great, but it was even in the paper (see "car wash" link) so I couldn't very well just not be there.  My mom decided to take the kids to her place for the afternoon while we carried on.

They played outside between showers and of course he we low at snack time.  A couple of cookies and all was well again.  Since it was mothers-day this past Sunday, she decided to just get together for dinner on the Saturday and we ordered pizza (yummy, cheesy, evil pizza).  Of course he was a wacky after that and we chased numbers for a while, but we've seen worse.

At bed-time, I was a wreck.  Senior Manuel Labor and I do not usually get along well.  I was shamefully gleeful when his dinner +4hr check was 0.1mmol/L under the correction threshold.  Then my guilt git the better of me and I gave him 1/2 a unit.  I knew this would only make a marginal improvement and I usually double that despite the original plan we left the hospital with, but I wasn't sure if even my hated alarm clock would wake me up at 2:30am to go check him.  I hit snooze until 3:00, but I managed to get a check in.

Of course this all coincided with the end of an almost two-week run of awesome numbers and the last two days have been spend on the glucoaster again, but the ping-pong ball is heading closer and closer to the middle of the table and hopefully things will settle out again soon.

I'd say that Saturday was a typical deviation from "normal".  There are exceptional and really hard days, but as far as "typical", that's kinda the norm on a D-focused day.