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.

CGMing...revisted

Well, after a long hiatus from the big needle of the continuous glucose monitor, we're back on as of last night.  We've had a bit of a sugar battle with Cadence over the last couple weeks, she seems to be growing and eating quite a bit more, thus her sugars have been a bit more variable of late.  She's funny though, certainly a product of her parents, go-go-go...EAT and so forth.  So we popped the Dexcom into her yesterday, the insertion of that device is SOOOOO MUCH BETTER than the Minimed product, it was over in a matter of seconds and she was unbothered by it for the most part.  The one thing about Dexcom is that the blood sugar values that it spits out seem to be a bit more accurate than the minimed.  I just wish it had the proper units on there and some rate of change arrows, that would be awesome.  

So, we're going to do some basal testing (as much as can be done with a ravenous toddler), and watch the sugars rise and fall over the week and make some changes.  It's amazing though, prior to having the CGM in her, we just corrected or bolused, checked blood sugar every hour or so and just let the chips fall where they may (with great success I might add).  Now that we have the CGM data in front of us it's addicting to see it change through the day.  :)

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.