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.

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.

Pumping - a 2 week check in

What a whirlwind that last 2 weeks has been for our family!

Cadence began pumping on her Animas 2020 on March 31.  We started on one basal pattern and then went from there.  There's been alot of tweaking with her Insulin to Carb ratio (how many carbs 1 unit of insulin will cover), her Insulin Sensitivity Factor (of which I have no idea how they calculate), and of course the basal rates (how much background insulin she gets during periods of the day).  

Four days into the pump start we started getting some highs, it turns out that Cadence picked that week to get a cold and pinkeye.  Fun...not.  So we rode the high sugar express for the next 5 days, threw out any hope of dialing in our pump settings for that period in time and just wiped the nose and soothed the cries.  It was like real parenting!

After the illness was over we are back to the adjustment of no needles.  That being said we still have to put in Cadence's infusion sets every three days.  An infusion set (in our case) is a spring loaded needle device that puts a flexible plastic tube under cadence's skin with a port/interface above the skin which we attach her pump tubing.  It's pretty slick and easy but there is more involved with it than a regular injection.  Numbing the site, priming the pump, mixing new insulin, etc. etc.  

We've worked out a few kinks in the system as well.  We had an infusion set go bad on us one night and Cadence's blood sugar shot up into the 20's (VERY high), so I had to give her a needle at 3am one night to bring her sugar down.  So, the no-needle streak lasted 6 days, but was also the last one I've given since.  

One of the hardest adjustments to the pump thing is where we put it.  We bought a bunch of tank tops from Pumpwear, which are simply a little pocket on the shirt to hold the pump.  That covers the daytime hours, the night time is the weird one.  We can't figure out exactly how we want to have the pump on Cadence at night, leave it loose?  Drop it down one of the legs of her pajamas?  Pump pack?  We're trying everything out,  One night Nic went to pick her up out of her crib and the pump was wrapped around one of the bars and "rip", out came the infusion site (ouch).  Cadence was unimpressed and irritated by that.  Luckily, on a tip from another diabetic, we left the old site in for a few hours "just in case", no we reconnected and changed the site again in the morning.  GREAT tip there.

Overall we are loving the pump and Cadence's control seems to be better.  Lots of tweaking to be done still but as I've said before, I can't believe we waited this long to go this way.

b.