pump, pump, pump it up...

It's been awhile since I've updated on this journey.  To be honest, there really hasn't been much to update.  It's all just become a part of normal life.  Boogie's BG (blood glucose) numbers have still been all over the place with no rhyme or reason, but such is the life with diabetes!  I feel like we've wrapped our heads around it all and we're moving forward.  I don't panic when he hits a really high or really low, we just follow protocol and move on. But, there's been one thing we've been anxiously awaiting....the pump!!

Even when we were in the hospital, the doctors and everyone kept talking about how an insulin pump would be so beneficial for Boogie.  Since he's so young and small he needs very small amounts of insulin, which really can't be achieved through MDI (multi daily injections).  With MDI, the smallest dose we can give is 0.5 units.  A pump can give a dose as small at 0.025 units! In theory, being able to give dose in such small increments, will help control his BG much better.  It will be easier to keep his baseline stable and we can match his carb to insulin ratio with much greater accuracy.

Well, the time has come and Boogie is officially a pumper!!  I'm so grateful that the team at Children's Mercy is so 'pro-pump!' Only 6 weeks after diagnosis and we're pumping! They made the process very easy.  I've heard stories from other T1 parents who have had to jump through hoop after hoop to get their kiddos on pumps.

Long story short on pumps: There's basically three different pumps available right now. The Animas, the Omnipod and the Medtronic.  They all work exactly the same way, but each has their own features they make them unique from the others.  The Animas has the option of controlling things from the pump itself or from it's wireless remote.  The Omnipod is just that; a pod.  It's a wireless pump with no buttons and is completely controlled by it's wireless remote.  The Medtronic has an integrated CGM (continuous glucose monitor) and wireless glucose monitoring device called MySentry.

The CGM and Mysentry were the selling features for us!  Any parent of a T1D will tell you their biggest fears are nighttime; their child dropping too low and drifting into a coma (or worse).  The CGM and MySentry are a little 'peace of mind' to help with this fear.  The CGM will monitor Boogie's BG 24/7.  While it will measure interstitial BG as opposed to capillary BG (meaning it will be a delayed reading by about 5-10 of his realtime BG level), it will be a great tool in tracking trends in his BG level and will alert us if he is dropping or rising at an extreme rate. The MySentry works kind of like a baby monitor, but instead o listening to him snore or watching him sleep, it will display his BG readings to a monitor by our bed.  The MySentry will alarm if his BGs are dropping or rising quickly or when he is getting close to his low or high limit.  This will not eliminate finger pricks because, as I said, it's a delayed reading and we need accurate, real time readings in order to give his bolus (mealtime) doses, but it will help to keep him safe.

We met with the pump trainer from Medtronic today and Boogie is officially 'live' on his pump! He's a little skeptical of it (as I'm sure anyone would be with a cell phone looking thing attached to your hip all the time), but so far so good. The trainer suggested just doing one thing at a time. So, for a week or so we're only pumping.  Once we get the hang of it, we'll meet with her again to add on the CGM and MySentry. A fellow T1D mom posted a tutorial on how to make a pump pouch which was really helpful!  I whipped together a cute little Jayhawk one for Boogie; it pretty much looks like he's rockin' a fanny pack :) I'm a little addicted to them already and he'll probably have one to match every outfit!!

fear...

I don't even know how to put into words the fear that I'm feeling now, and forever will.  It's not until you're living in this diabetes world everyday that you realize what that truly means; what the reality of this world is. Death.  I'm still learning to say it.  I haven't said it out loud yet.  I've tried. "I'm scared that Boogie is going to..." is as far as I can get before that bubble builds up in my throat and the tears choke off my ability to speak.  I know that I need to accept it as reality, but how do you accept something like that?

It's a good thing I was always a good student.  I love to learn. And now, I will forever be learning.  I want to know as much as I can about this disease and how to stay in control (as much as you can ever really be in control of diabetes).  It's the only way to fight it.  I do have to be able to look at myself everyday and feel like I've done everything I can to give Boogie the best care possible. I want to make sure he understands the reality. That he can learn to take control and respect this disease.

A friend shared this article today and it really hit home.  It's what inspired me to write this post and to try again to say what I'm truly fearing. Please note that this article is not easy to read, but it is reality.

http://diabetesdad.diabetesblogs.com/2012/09/04/dead-from-diabetes/