Tuesday, July 29, 2008

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.

Saturday, July 19, 2008

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.