New Pump Slump

I’ve been struggling to write a post about the new life we are living with the pump.  Ian got his OmniPod on March 10th, and the last two weeks have been….

Exhausting. Frustrating. Liberating. Challenging. Scary. Exciting. Annoying.  Freeing. Confusing.

Put all those emotions together…and I find myself in a New Pump Slump.

I find I don’t really want to talk about his pump with people, because it’s isn’t a magic cure.

People seem dumbfounded that he isn’t “regulated.”

People seem to think that he’s fixed now with this pump.

He’s not.

And while it is a handy-dandy, pretty amazing little piece of technology, and will eventually be so much better….I feel like we are starting over in many ways.

It’s not as scary as it was a year ago when we had so much to learn….

But it’s a change that requires  you to let go of the “control” you thought you had – giving up control and trusting this little plastic pod on his body to do the right things. Yes, we still have the power to adjust the bolus, set the basal…(don’t even get me started on the new vocabulary I’ve picked up in 13 days).

It’s hard.

What we knew worked for baseball and gym days and snacks and meals and bedtime….doesn’t work anymore.

When he goes from 170 to 44 during baseball…

When he doesn’t even feel his low of 38…

It feels like we are failing him….like we’ve forgotten everything we’ve learned.

I know that none of this is true. I know we are doing the best we can and this is just another huge lifestyle change that will get better with time.

But when you are sleeping no more than 3 hours at a time each night….it’s hard to see things that way.

We need a change.

Monday is Ian’s next appointment with the endocrinologist.   I cannot wait.

We need a change.

He spends entirely too much time in the 200-300s and it is difficult to get a response from the doctor’s office.  They have a way to submit blood sugars online and they “will call you if they feel you need to make changes” but I feel like 1) the online feature is broken or 2) they aren’t reading my emails and notes regarding his blood sugar or 3) they’s changed the acceptable “in range” (just kidding, but seriously…..from what I can gather, the land of  >200 stinks….a lot.)

They are great doctors in a great hospital, don’t get me wrong.

And I know that there are MANY MANY kids being diagnosed and treated every day.  But still…..

What about my kid?

I am not happy about the fact that he has to be miserable and miss his afternoon snacks and be a grump butt and be tired and blah.

On Monday we are going to ask for a better plan – Permission and guidelines to make adjustments on our own without waiting for days for someone to call. (Leaving a message on the “hotline” isn’t any better. It says to give them 72 hours to get back with you and by then the weekend has rolled around it seems.)

I have a feeling his A1C will be up from the last time.

That stinks.

We thought we’d be in big time pump planning mode by this point but we had to cancel a few weeks ago when the flu hit us.

That stinks.

He’s starting school with crappy blood sugars.

That stinks.

I hate things that stink.

My attitude included, but We. Need. A. Change.