A new life of questions

We had a new baby girl brighten our world on April 27th!! Hailey Grace is her name and she's a wonderful little girl. The nights are long but there's always coffee in the morning to make sure the day goes smoothly.

My conversations with people take a turn that I suppose I didn't foresee. The first question people ask me is: "is there any sign of diabetes?". It's a totally fair question I suppose. It highlights, at least partially, the misunderstanding out there about the disease. Many people, through no fault of their own, don't know that there is a difference between Type 1 (Juvenile) and Type 2 diabetes which is often a result of lifestyle issues. Many don't know that Type 1 diabetes a silent disease and there are no warning signs of any kind. Cadence is a perfect example of that in that she was healthy one day, within 24hours she was fighting for her life...both of her parents, who are physicians in their own right, had no idea what happened to her system in that time span until the ER doctor told us.

So, are we concerned about Hailey? No more than any other parent of a new born would be I suppose. Right now she's perfect and we have no reason to think that she'll ever be any different. There's no question diabetes will be at the back of our minds as she grows but we don't expect that she'll contract it. What's funny right now is that feeding is so easy with her in that we sort of feel like we're missing a step. So....no blood checks or pre-bolus...we don't have to weigh the breastmilk and count carbs?? Kind of seems all to easy!

Welcome to our family baby Hailey! :-)

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.

Happy - Merry - New

Resolutions....definitely be more attentive to my blog!

2008 was an AWESOME year. We had many trials but more successes this year. Cadence turned 2 years old, started pump therapy, and our family began to enjoy things outside of the big D.

I spent some time and compiled a video of our year, I hope you enjoy.



b.

Pump Love

Cadence calls it her "Pack-Pack", just like the one Dora wears at all times. She knows that she can't go anywhere without it, a permanent feature of her clothing is to have the lump on her back, dangling by her side, or wedged into one of those useless pockets they put on toddler's pants. "MINE!" she says whenever we go to change basals, deliver insulin, or just see what's going on. It's pretty funny how much she loves the thing, so do her parents but for much different reasons.

Here's a play-by-play of our decision making last night, we'll get back to the pump-love soon.

Last night was a "D-night", Nic was out for dinner with her sister and it was Daddy-Cadence time! We put in a new infusion site yesterday and it was working BEAUTIFULLY all through the day. Mid single digit blood sugars all morning. Around 3-4 pm though, just over 24 hours after the new site went in, Cadence started to run high. We changed out the insulin cartridge with some fresh stuff, just before. I corrected for a 16.4 and then we chased spokes around the kitchen to try and bring things back to Earth. To no avail, just before dinner, she was 21.4!! A relatively carb-free dinner in the belly and we were off chasing spokey up and down the stairs. At 8pm just after a bath I check again and she's still sitting at 19.4. Bummer.

So here's the variables you face. It's bedtime, she's through the roof on blood sugars. We changed the insulin, soon after she went high. The insulin isn't more than a week old and has been in the fridge. Her infusion site has been working awesome for 1.5 days, normally we change them out on the 3rd, maybe even early into the 4th day with no problems.

Scenario A: I change the insulin,? What if it does nothing to change it out again and she stays hight through the night, develops Ketones, gets sick, dehydrates, and pees through her diaper.

Scenario B: Do I change the infusion site and anticipate that she will invariably go low in the middle of the night? As a habit, we usually don't change a site at night because Cadence is very sensitive with a new infusion site and we have to watch closely for unexpected lows for the first 6-8 hours.

Scenario C: Correct again and see if she comes down through the night? If she doesn't, I'm faced with the scenario as I was with "A" and now it's the middle of the night and we will need to bring down her blood sugar before breakfast, where she invariably spikes.

Scenario D: Change the infusion site and the insulin, and eliminate all possible variables and deal with a night low, and frequent middle of the night blood checks.

What would you do?

I chose a hybrid of D so to speak. I made up new insulin, just in case, and changed the infusion site. That way if with a new site, she doesn't come down I can now suspect the insulin, change that out and we're okay. If the new site does bring her down, I've not wasted a whole bunch of insulin. Solves all issues other than Thursday morning sleep deprivation.

Well, the new site worked beautifully and when I got up to check her at 2 am, sure enough she was trending downward 6.8 with 6 hours of sleep to go. Now we talk about pump love. Without the pump, you have no control over how much work basal insulin is going to do for Cadence, at 6.8 at 2am without an insulin pump ie on insulin shots, I'm probably going to a wake her up and make her drink some juice. With the pump, I manually "temp" her basal, meaning I can control how much she gets over the next number of hours. I reduced her basal level by about 30% for an hour to see if that would bring her sugar up. It wasn't enough, at 4 am she was 4.8. On shots, this is a foresure wake up and juice scenario, but with the pump, we knocked her basal down by 50% for 90 minutes, 2 hours later, she's is back to 6.8. No major low, no toddler sleep interruption (which is the biggest win for everyone).

What the pump allows a diabetic or their parent to do is become a pancreas. We used the pump for Cadence last night in a way that allows her to have normal resting blood sugars and not have any interruption in her rest. It gives us variable control for a variable activity and eating level which is essential when working with a toddler. Now that I hear that British Columbia is directly funding insulin pumps for children....I'm wondering why Alberta is still behind the times. If the parents of a child are willing to learn, the insulin pump can offer a new level of normalcy to your family.

Thanks pack-pack!
b.

World Diabetes Day

Today is an important day.  Today is WORLD DIABETES DAY!!  We hope you take time to consider what you can do to help.

I surveyed the diabetics in my practice this week to find out what they are planning on doing for the day and only one of two of them knew it was happening.  That has to change.  

We're heading out as a family tonight wearing the new and improved "One" t-shirts that I designed.  We will ask for questions and provide the answers :)  

Think it, celebrate it, find the cure.

b.

Happy Halloween!

Halloween is fast approaching and Cadence turns 2 years old on Thursday.  Holy smokes, this has certainly been the longest - shortest 2 years we've ever had :)

I said to a patient the other day about parenthood, especially one with special needs, "it's amazing, there's never been a stretch in my life where i've been awake for more hours yet remembered little of what happened."  Well...there was University....

I've had a bit of blogger-block of late, haven't had much to say in truth but as always, reading Sixuntilme always puts me in the frame of mind I need to be in, her energy is contagious.  

Here's the current conundrum for this week.  Cadence's birthday is October 30th...Halloween is the 31st.  Obviously those two dates will be necessarily tied together for the foreseeable future.  Sounds perfect, a great kids "holiday" to go along with a birthday, an instant themed birthday party.  The only issue is that Halloween, for kids is predominantly based upon "loot", and that is Candy.  Pure refined, tooth decaying, insulin sapping sugar.  A diabetic's parent's worst nightmare in truth.  So you take a child's birthday, necessarily tie it into Halloween and try to tell a 2 year old that you can have a birthday gift but not the candy.  Oh the irony!  

We're already planning how to bribe her with some broccoli :)

Tonight we plan the infusion site change, the new insulin, getting everything ready for Cadence's birthday/halloween party.  We're finally going to get another Continuous Glucose Monitor into her again for this weekend, and that data I plan on posting here for reference.  Hopefully everyone on the block is giving out diet candy on Friday......better have a backup plan.  

Once again, as the old saying goes "exercise is the only Panacea we know", so as Cadence runs from door to door with the other kids, she'll be able to absorb the sugar in her system better.  We'll probably let her have some candy, as every kid does, and just plan for a long night.  Who knows, it's our first one and we'll be going at it with considerable creativity.

Happy Halloween!

b.

Wow, it's been a while.

Summer happened and I haven't written in over a month.  Wow.

Lot's of things going on in our household for the last few months.  Cadence continues to grow at a furious pace which of course brings mass sugar roller coaster sessions.  We actually made a bunch of basal changes with her, mostly increases with timing tweaks, to accomodate her not breastfeeding any longer, and a ravenous appetite of a 22 month old.  I would like to say that we carefully and deliberately made incremental basal changes armed with the knowledge of hour by hour basal testing...but that would be bullshit.

We guessed.  Her sugars and basals were going along so great, so stable, then all of sudden it was like the pump turned off.  She had massive ongoing highs, sometimes taking 2-3 corrections to restore and horrible night time lows to boot.  All of this while Nic and Cadence were on the road in Windsor.  What's been interesting in our experience with a baby, now toddler with Type 1 diabetes is that it's a road less travelled and one that's even less maintained.  Almost no one, barring a few parents we've met online, have a clue how to manage a very young child with diabetes.  We're essentially blazing new trail.  So, after reading all the books, manuals, papers, guides, and websites we could about establishing insulin to carb ratios, Insulin sensitivity factors, correction factors, basal calculators....We took a W.A.G. , clinical lingo for a "Wild Ass Guess".  We doubled her breakfast basal, 30% increase to her afternoon, 15% dinner, 10% lower nighttime.  Guess what...it worked, she's doing way better now.

Now while I don't recommend anyone use this clinical approach for managing their diabetes, there's alot to be said about instinct.  I've talked to many diabetics who can tell you to within a few points, what their blood sugar is.  Certainly more accurate than the "acceptable 20% error" of traditional blood glucose meters.  It once again highlights one of the famous acronyms used in diabetes, which is: "YDMV" - Your Diabetes May Vary.  

The moral is that despite the rules and guidelines that are meant to help make decisions for people with or associated with this disease, asking questions and using your gut can be one of the finest tools of measurement at your disposal, certainly not one to be overlooked.  

Here's an experiment for all you type 1's out there, if an endo asks you how you feel...don't tell them your blood sugar first, answer the question.  It may change the approach to your care.

b.