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.

The Last Shot.

I can't believe we're here already.  March 30th, the eve of a very fresh start for Cadence.  We start insulin pump therapy with Cadence as of tomorrow morning.  From here till....well....who knows, Cadence will have the pink Animas 2020 saving her life everyday.  The pump will be attached to her 24/7 delivery micro amounts of insulin.  We can push buttons to deliver higher amounts for food or highs, suspend delivery if she's low or sick.  It's very exciting to have the potential for incredible control of her diabetes.  For the last 7 months, we give her a bunch of insulin and hope that she takes in enough carbs to cover the insulin and also that we've given her enough insulin to cover the breast feeds...let alone trying to figure out how many carbs are in the milk and how much she takes in.  Our A1C is really just an average of the highs and lows.

I  have 3 syringes left to give her, and then there's no more needles.  That point is just so valuable to me, I can't even describe it.  I came home the other night from work and she was happy to see me but ran away because she knew it was time for a needle.  I can't even tell you how hard that is for me as a dad.  Nic and I are so happy to be free of having to stick Cadence with 8 needles a day...for now.  I remember the first one I gave her last year and I almost broke down doing it, it's easier to do now, I'm better at it.  The hardest part is that she cries a bit, holds the injection site, and gives me the ultimate hairy eyeball.  So I say (to a baby) "sorry Buttons."  I'm sure she's saying "whatever dad, I'll get you when I'm 14."

The stomach bruises suck.

A quick calculation will show that Cadence has had diabetes for just over half of her life, she is now 17 months old.  She has endured approximately 1856 needles and nearly 4000 blood checks.  The little girl is tough as nails and she amazes me.

So, today is kind of like Christmas eve the anticipation is palpable but everyone in our house has a sense of confidence and anticipation for this next chapter in her life.  

Until tomorrow,

Brad.

Random question...

Why the heck is Diabetes plural?  I understand there are two types but couldn't me more opposite of each other. 

Perhaps Diabetes is plural because it is not only the patient that has to deal with it...it's everyone around them.  Parents of a diabetic become diabetic by association.

In other news, we have received the Pink Animas 2020 pump and the Guardian CGMS system is on order and we should have it early next week.  We're super excited to get started on things.

Also, all three of us are racing in the St. Paddy's Day 10km race tomorrow in support of the Canadian Diabetes Association.  I made some race shirts for Nic and I and designed a family team logo.  

Team Cadence is born:

Sales

What a decision Cadence's insulin pump was.  It would seem to be a simple choice when it comes down to 2 products:

1. Minimed 522 with CGMS

2. Animas 2020 with a standalone CGMS

Minimed was 1 unit for Cadence to carry, Animas would require 2.  Seems like an easy choice until you factor in who is involved with providing and servicing the device that will be attached to my daughter for the next 4 years 24/7 saving her life every moment she wears it.  It's a hard decision and I agonized over it.

In speaking with the different representatives of the pump companies it became abundantly clear that there are those who look at their job with passion and those that may not.  A BIG

 for instance:  I made a deal with the minimed rep, confirmed it with a handshake, that this company would provide Cadence with free CGMS sensors for a year if I was willing to become an educator/advocate for their products.  I let the rep know that we may not choose their pump, which is obviously the product they wish to sell (7000 dollars worth of reasons), but would most likely go with their CGMS product,  if we decided against their pump (2000 dollars).  The rep said that she that was no problem and just wanted what was best for Cadence, "the deal was still on".

So, we ended up choosing the Animas pump for  many, reasons, and more which were revealed this morning.  Unfortunately, Minimed's rep has pulled our "agreement" citing having to talk to the manager.  I said "so am I to assume the deal that you made with me on Cadence's sensors is dead now and I am to proceed on my own?" which was replied "I'm going to have to take a step back".

Good deals sometimes have hidden conditions.

We love our Animas pump and the people behind it.  Minimed in our experience is a big company with numbers of clients.  After my conversation today we are more than pleased with our decision.  That said, they have my money as I still bought Cadence the Guardian CGMS unit and sensors but it was based on the technology and its ability to help Cadence, not the pitch.  A word of advice to the Minimed rep don't use someone's health the most valuable commodity we have, as leverage to make a sale.  It's bad practice, it's bad business, it's bad ethics, you should know better.  

b.

Minimed Guardian

The Dexcom 7 trial was awesome.

Despite some of its shortcomings, the accuracy of information gleaned from the Dexcom 7 was invaluable.  Within 2 days we were able to set a much lower target BG for Cadence's bedtime as we noticed that she doesn't drop significantly in the middle of the night.  This does usually require a small breastfeed at about 3 am and a correction dose (.5U) of humalog for those carbs but she is sleeping from 9pm to anywhere between 6:30 and 8:30 in the morning.  I'm up and gone for work before 6am so I miss the sleep-in (bummer!).  This tweak alone takes out Cadence's high nighttime BG's.  Last night, she slept soundly and hovered at 5.6-8.0 mmol/L for the whole night.  This has been so nice to see.

Some huge pluses for the Dexcom:  

 - small insertion needle

 - no dangley bits on the sensor, everything is affixed securely.

 - seven days of wear (sooo nice)

 - good software program

 - menu's are simple

Some downsides:

 - It's been said before, that damn sync cable and choice of only the Onetouch Ultra.  

 - awkward receiver size

 - not able to scroll backward on the receiver to see past data (love this about the minimed)

 - no 24 hour trend screen

There are some other hassles but those are the majority.  Overall we were extremely satisfied with the Dexcom 7 system.

When we tried the minimed paradigm 522 pump/CGM earlier this month I always felt like we didn't give it a fair opportunity to show us what it could do.  Admittedly the sensor wasn't secured as well as it could be with the tegaderm.  The clamshell/sensor interface was right at the top of the diaper, we calibrated during times of not so stable sugars, etc.  We are now testing the Minimed Guardian system, which is the stand alone CGMS for minimed.  It's essentially a 522 without the pump in it.  The CGMS has quite a few more features than the 522 does.

The sensor insertion went MUCH better this time than our last go-round.  Using some of the mistakes that we made last time, Cadence did fine with it.  The sensor went in easy, we covered everything securely with tegaderm, and she was playing happily within minutes of the event.  The startup and calibration went off without a hitch and the data through the day yesterday was very accurate.  A nice change from our experience with the 522.

The Guardian has "predictive alarm" capability which already has come in handy.  Cadence and I were out with Spokes, the family airedale terrier for a walk yesterday.  About 3/4 through the walk I heard an alarm from the Guardian, checked it and it said "predicted low alert", so i did a blood sugar check and sure enough she was dropping quickly but still in an ok range.  So, I gave her some fruit bar to chew on and we marched back to the house.  As we approached the house I heard another alarm and the Guardian said LOW.  I got everyone into the house and checked Cadence's blood sugar, it read 3.4.  That's getting a bit dangerous so I quickly grabbed some banana and soy milk and we had some snacks.  In checking the "Real-Time" BG reading, the Guardian showed her as 4.5 with 2 arrows dropping (very quick).  So, that's the 15-20 minute delay that exists.  The BG reading is not accurate but the trend is, we knew it was going to be lower.  

So, this predictive alarm is fantastic...except at night.  We were up a bunch last night to turn off the predicted low alarm as Cadence was 0.1 mmol/L under our threshold but holding steady.  This isn't a knock against the feature, it's doing exactly what it's supposed to do, but we will now turn it off at bedtime and set her low threshold a tad higher.  After I turned that off, the night went perfectly.

So, we'll spend the next 6 days or so testing the Guardian before we make our final decision on which device we will use and will keep things updated here.

On a side note, we had a meeting at the Diabetes Clinic yesterday and our nurse asked me "how are you doing?"  It wasn't a casual, looking for a canned answer, kind of question.  She was referring to how I was dealing with the experience of my role with Cadence in the hospital.  I was the one who held her down while the ER docs drilled into her shin to get fluid into her, looked in her eyes and saw the fleeting life, fear, pain, and panic.  I held her down when the phlebotomist came into draw venous blood as she would soil herself in panic.  It haunted me for months, and still does I now realize.  I guess I sort of repressed it a bit through alcohol and focusing on other things.  I feel like I'm on the other side of those habits though.  Her question really brought back some difficult feelings and flashbacks, but also a significant question:  

Would I trade the experience of being there for her through those moments vs. not knowing the panic that she went through?  Would it be better if I didn't see it?

It didn't take me more than a millisecond to decide: Not a chance...I feel lucky that I was the one to be there to try and comfort her, I hope she in some way remembers that I was there.  So, yes I struggle but I wouldn't trade it either.

b.

Dexcom - day 5

We are dexcom day 5 with Cadence.  What a great little device, which has already paid for itself in spades after a scary low on the weekend.

We were cruising through a showhome in our 'hood looking to

 steal some decorating ideas for our little hacienda.  Cadence was ripping around the house, up and down stairs, jabbering at all the other people milling about in there on Sunday afternoon.  We heard the chirp from her Dexcom CGMS and the warning that she was dropping low.  We sort of expected her to go down a bit as a result of her activity, so we casually picked her up, went over to the kitchen table in the showhome and did a quiet fingerpoke.  The number on the blood glucose meter said 2.2 mmol/L (35 md/dL).  That is a severe low and a very dangerous one for a 15 month old.  The worst part is that she had no idea...  confirming our suspicion of "hypoglycemic unawareness".  Cadence doesn't feel her lows, where as most diabetics feel horrible during a low, it's their safety net.

So, I sprinted out of the showhome to grab whatever carbs we had from the car, while Nic put Cadence on the boob.  I grabbed fruit bars, soy milk, anything really, and ran back into the showhome to the surprise of the salespeople there.  So with about 25-30 people moving in and about the showhome we treated Cadence's second lowest glucose reading since her diagnosis.  We had carbs, a sock, and bloody test strips layed out over the kitchen table...in the middle of the showhome.  Sometimes you just have to make due LOL.  Once recovered, we continued the tour through and upon exiting she showhome manager says "that must have been some diaper change!  By the way, is that a GPS on your daughter?"  :)

Now, onto the Dexcom.  What a great little device, and proven so in the above story.  We are on day 5 and the finger stick readings comparative to the dexcom trends are very close if not bang on.  If there is a difference, it's usually as a result of taking a reading at the peak or valley of of change in glucose levels.  Otherwise, the dexcom is usually well within 10 points (mg/dL) of the meter reading, a huge plus.  With the minimed system we had values that were absolutely nowhere near what her blood glucose reading was, even at times of stable sugars.  So the question begs:  What's the point on putting a "real-time" blood glucose reading on your display if the user is amazed if and when it's accurate?  The trending bars are invaluable though.

We are still undecided as to which technology we are going to invest in but the Dexcom appears to be a better product.  If only they could pay one computer programmer for 3 hours work and make some rate of change arrows (like minimed's) and have an option to use mmol/L or mg/dL, it would be the giant killer of Minimed product.  For the price of these "next generation" units it's amazing that a handheld poker game from the airport has more display and computing capability than these devices.  We're going to give the minimed another shot next week though and see if it can stand the test.  

With Cadence's hypoglycemic unawareness, it appears that we don't have much of a choice of not going with a CGMS.