Grace loves the Black Eyed Peas so the title of this post goes out to her. . . .
I think one of the most frustrating aspects of diabetes is how technical a condition it is. When you say to someone, "I have cancer," people get that. They roughly know what cancer is and how it's treated. When someone says, "I have diabetes,"most people really don't get what that means and generally think Paula Deen is representative of the diabetes community. Explaining to someone what exactly diabetes is (and isn't) is ridiculous. "You see, you have this organ called a pancreas and it makes insulin. . . . . " And then try explaining how you manage diabetes. "You see, you need to take insulin. No, not a pill. . . .No you can't control it with diet. . . " And then I usually give up and conclude, "It just sucks."
The technology of diabetes is another doozy to explain to people. When we were in the emergency room when Grace was diagnosed, I remember a doctor who is also type one showing us her test kit. She wanted Grace to see that you can get it in all kinds of cool colors. Hers was purple and she thought Grace would like that. I remember her unzipping her bag to show it to us. I just stared, I had no idea what she was showing me. I remember thinking, "What the hell is all of this? What do you even do with all of that stuff?" Even now, when we're testing Grace's sugar in a public space, I don't think people are staring to be rude but it is very curious this whole technology thing.
From our first endocrine appointment, our doctor has pushed us to get an insulin pump. A lot of you have heard me talk about the pump and you may or may not have a good idea of what exactly a "pump" is. An insulin pump works like an IV. Here is a picture of one:
This is a pump. It's about the size of a cell phone-a little heavier. Attached to the pump is a tube that then attaches to Grace.
This is a medtronic pump but you get the idea. The pump delivers insulin via the tubing. It is completely awesome in that it eliminates shots. We will go from 18 shots every 3 days to 1 shot every 2-3 days. The site hook up lasts about 2-3 days and then you attach it to a new part of the body. Where the pump is not completely awesome is the learning curve.
The pump is a fairly complicated piece of technology. You have to learn a whole new vocabulary and a new approach to managing diabetes. It's damn intimidating. We were resistant for a while because getting the hang of managing diabetes has been a long process. We finally felt we had the hang of injections and things were going well. But every blessed appointment our doctor brought it up. And he got Grace fired up who would turn to me with her big, gorgeous blue eyes and plead for the pump. I'd say, "We're just not ready," Grace would beg and whine, and her endo would say, "I think you should listen to Grace." And then I'd shoot him the death stare. And feel like the worst parent in the world.
The pump offers us the chance for tighter control of Grace's numbers. Without going into too much technical stuff, the pump offers more precise dosing of insulin. We can also get better control of her night numbers. Sometimes when I check her in the middle of the night her sugar is high and we would normally fix that number but that requires a shot and I'm not waking Grace at 2am for a shot (or even a hug. She's just plain mean when she's sleeping). The pump offers us the ability to simply enter the information without disturbing baby bear's sleep.
We did our research and decided to go with a local company. Animas is known for their amazing customer support. I've read stories of people who needed a new pump because a screen broke and they simply drove to the company (in West Chester, PA) and there was one waiting for them at the front desk. Practically everyone who I've dealt with at the company wears an Animas pump. Our sales rep confirmed it's kind of like a cult. I like that. Cults are good. The animas pump comes with a remote. So Grace will wear her pump in a pouch kind of like this:
And then we use this remote to enter in her dose:
We like the remote feature because once Grace has her pump in a comfy spot, she won't have to fish it out for us to enter her info (which you can do if the remote goes missing). She begins eating, I count her carbs, enter a dose, and it delivers the dose. Talk about technology. . . .
So that's pumping in a nut shell. And this is where we are at. Animas is processing our paperwork and I'm sure there will be insurance issues because there always is. It's an anticipated fact of life around here. Grace is so, so excited. Personally, I'm mixed. I know this thing can really help us but it's something new and scary. It brings back lots of bad feelings from the summer of feeling overwhelmed and scared and angry. And I know as much as Grace wants this, the road ahead of us will not be easy. Wearing a pump 24/7 is going to be a huge adjustment--physically and emotionally. It's going to mean lots and lots of work (largely by me) to get a handle on this new piece of technology. But I think we've come far enough to know when to lean on our CHOP team and T1 friends for help. Grace will need her space and I'll need mine as we learn to accept this new aspect of diabetes management. In the meantime, Grace is kind of like Bart Simpson assaulting the mailman every day, "Where's my spy camera!"
Our next step is to get the pump and then head back to CHOP for another round of pump education. We'll walk out with Grace pumping saline for a week to make sure we have the hang of it before we "go live." I'm thinking around Easter we'll be up and running. Just in time to cover the peeps, chocolate eggs, jelly beans. . . .