Friday, June 10, 2011

Ah Yeah, It Isn't Freakin' "Magical" --- by: Reyna @ Beta Buddies

My lovely friend, Reyna from Beta Buddies is guest posting over here with one of her 'greatest hits'.  I love this post so much and I truly hope all of my friends and family will read it to understand that Nate's OmniPod is NOT magical.  It only works because of the hard work and dedication that we put into it.  

Thank you, Reyna for honoring me today by sharing your wonderful post and helping educate my friends and family.

About the title...and yes, I am starting to notice a pattern... with my "about the title" nonsense. I will try to stop after this post. So, back to "about the title"... I sooooo wanted to use the "F" word, but thought of my poor mother and refrained. Love you Mom.

Over a morning cup of coffee with my Mother-In-Law over the Thanksgiving Holiday, camaraderie washed over me as she shared an observation of hers. She had noticed when discussing Joe's diabetes with friends and acquaintances that people somehow, someway, somewhere have gotten the idea that the pump is "magical".

"Magical"... the art of appearing to perform supernatural feats using sleight of hand or other methods... an illusion.

Ah... or...

"Magical"... the use of supernatural methods to manipulate natural forces, such as witchcraft ... paranormal.

So, I think, unfortunately a portion of the general public thinks the pump can perform supernatural feats and perhaps some sort of fucked-up witchcraft resulting in euglycemic bliss. Well, let me share with you this: Nothing could be further from the truth. period.

Hard Work Not "Magic"...

The insulin pump is connected to the user 24/7. It uses short acting insulin that is pumped into the user 24hrs a day at pre-set rates (this is your basal) and then you need to program the pump to deliver insulin (a bolus) every time you eat carbohydrates (which requires you to measure or weigh your food...every time you eat) and whenever the user's blood sugar is high (the correction factor). Because there is only short acting insulin being used several checks need to be done throughout the day to check that the dosages are adequate and that DKA is not looming in the mix.

A typical day looks like this: 

(Keep in mind this is everyday...always...there are no breaks...EVER. There is no "magic" people. Managing diabetes takes an incredible amount of work)

7am - Blood Sugar check; weigh cereal, measure milk, add up carbs...and then program the numbers into the pump.

9am - Blood Sugar check; read nutrition label on a snack cracker pack for the carb count...and then program the numbers into the pump.

11am - Blood Sugar check; prepare lunch...bread , measure out jelly using a tablespoon, peanut butter and measure milk...add up carbs...and then program the numbers into the pump.

2pm - Blood Sugar check (if the number is over 200...program the pump to deliver more insulin).

5pm - Blood Sugar check; measure soup, measure milk, add up carbs...and then program numbers into the pump.

7pm - Blood Sugar check (if the number is over 200...program the pump to deliver more insulin).

9pm - Blood Sugar check

11pm - Blood Sugar check

3 am - Blood Sugar check
*and you wonder why we are fucking crazy...

This is a schedule assuming all is going as planned; it doesn't take into account activity, illness, growth, holidays, vacations, etc. Anything and everything can throw off the blood sugar numbers, especially when you are dealing with a young child with type 1.

The advantages of the pump, as I saw them and still perceive them to be, were/are:

1) The ability to work in tenths and hundredths of unit increments of insulin. On injections we were only able to work in 0.5 unit increments. When pumping you can work in minuscule amounts. Trust me when I say this function can compress Blood Sugars that would oscillate like the needle on Pinocchio's Polygraph Test to a more manageable variance.

2) Less piercing of your kids flesh with needles. Most pump sites can be changed out every 3rd day, although it has been found that every other day site changes may be needed for young children. We have been changing Joe's sites out every 36 hours due to a constant issue with site failures. We are in contact with the Animas Rep. and have tried various products. This is what has worked for us to date, but we are still trying to find a more feasible solution.

3) The pump does the math for you. I say this with caution. As the operator of the pump you must take into consideration the activity that has occurred, is about to occur, or is about not to occur. As the operator, you will learn how to handle different foods. I find high Glycemic Index foods require less insulin than the pump calls for. Additionally, I have found that pizza, mac and cheese, and such require a doctorate in nutrition and endocrinology and pumpology and astrology to obtain euglycemia or hell even a 200 point spread.

4) The ability to titrate the basal according to activity. When traveling via car or plane, I crank that baby (the basal) up by 50 to 80% starting an hour before the trip and ending about 30 minutes prior to Joe's feet hitting the pavement. For a PE day, I decrease the basal by 50% an hour before PE and for the duration of PE. For hockey practice or hockey games I decrease the basal by 50% an hour before the said event starts and extend that basal decrease for 4 hours to stave off the post-activity lows.

5) Pumping provides additional tools to utilize when dealing with "troublesome", "meddlesome", "chronic blood sugar busting" foods. As stated above, certain foods require additional measures to keep blood sugars "stabilized" (term being used very loosely here). The "combo" or "square wave" or "extended" bolus features of pumps enable pumpers to attempt to take on these difficult foods with an additional arsenal. I loved A Sweet Grace's post on this particular subject where Penny discussed the difficult to manage foods.

The increased work-load, as I see it:

1) Due to no long acting insulin on board, Diabetic Ketoacidosis onset can be more rapid. You must be diligent in checking ketones when persistent high blood sugars are present. Site changes should be done for unexplainable highs that don't respond to corrections.

2) More frequent blood sugar testing... for DKA... and for setting adjustments.

3) More adjustments and critical thinking skills are required.

4) Childcare and care provided at school becomes more "complicated" with the pump.

Some fears we encountered when taking the "pumping plunge"...

When making the decision to pump, I was worried about my exuberant in all that he encountered 3 year old boy being "hooked-up" to something 24/7/365. I didn't like the thought of it. I was worried that he would get his tubing caught on drawer knobs, door knobs, any sort of knob. I worried about the "visibility" of his condition to the general public by wearing the pump. I worried about DKA from an experience I had in my role as an ICU RN. I can honestly, frankly, and truthfully tell you that I have found all of the above fears unfounded. I think in the 4 years that Joe has been pumping he has only lost 1 site from catching the tubing on a knob. The other fears haven't even been realized. Not once.

Our pump of choice...

We chose the Animas Pump for Joe. I decided on it because of the incredibly small basal rate increments that it could be adjusted by (0.025). Joe was extremely sensitive to insulin at diagnosis and I felt that this was the "go-to Pump" for a little guy. In working with a few different pump brands, I feel the Animas pump is the most intuitive. Admittedly, I am biased. The L.E.D. screen is the bomb! Animas was the best choice for us. Joe has been pumping for four years now. Our "contract" is up with Animas. I plan on researching Medtronic and Omnipod over the next few months to keep my perspective "fresh". Although, I must say it would take a lot of flashy shit for me to switch at this point. Animas has had our back from the start... I am an Animas girl through and through.

Here are some posts that I plan on re-reading: If you have a post that should be included please comment with a link and I will add it. ThankS!

Animas Posts:
Medtronic Posts:

Omnipod Posts:

If you are just starting the decision making process on whether or not to pump, Donna from The Sugar Kids posted about the decision making and the pump start-up transition here.

Other Links:
Pump Therapy for Children: Weighing the Risks and Benefits
Links to Insulin Pump Information

A day-in-the-life of dispelling the myths of "magical pumps" and making informed decisions.

Thank you again, Reyna!!


Penny said...

Love Reyna and her insights! Thanks for having her 'magical' post here Laura!

Unknown said...

You are wonderful for having me! Thank you. This is perhaps one of my favorite "oldies-but-goodies". xoxo

kkd said...

Love this and it is so true how people think the pump works magic and makes taking care of betes a breeze. WOW!

Anonymous said...

Very helpful and intersting for me to read, since we're going through the pump change now...I keep thinking it's a lot more work than I thought. In a lot of ways, MDI is easier -- give and take...Roselady

This is a great post! Don't we wish it was as easy as magic?!?

The DL said...

I wish it was that easy! Sometimes when people ask me if, "I have it under control?" I ask myself, do we ever really?

Holly said...

My comment just evaporated! : (

This is awesome, Reyna! I guess I missed it the first time she posted it? Friends think we have a Magical Pump too-and what a wonderful explanation!
thanks for the links too ladies! : ) Holly

Excellent, thorough post!

If only pumps were magical! A D mama can dream, can't she?! :)

Love, love, love Reyna, as much as I love, love, love you, Laura! Thanks for this "Oldie but Goodie"! <3 Mo

Sarah said...

one of my favorites I've shared with multiple friends whom want to know more and think that "the pump thing" was a cure...ummm, nope!

Melissa said...

I was talking to a Child Health Nurse a week ago. I was talking to her how hard it is to have a CWD but she just said there are these machines now to deliver insulin that are really good. a)Like I had never heard of a pump AND b) they magically deal with the diabetes.

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Just a Mom

I am NOT a doctor, nor do I play one on this blog.

I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.

The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.

Please consult your doctor if you have any questions or concerns about your health care options.

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