Pump It

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. . . .

Mistakes

I've been meaning to post something about our decision to move forward with an insulin pump for Grace. We have our first class next week. I'll catch everyone up to speed next week after class.

This blog is about Grace's courage and that spans a broad spectrum of experiences. Last week we had an experience that again demonstrated to me that Grace is much braver than the vast majority of adults I know. It also taught me a valuable a less in control.

At Grace's last allergy check up her peanut allergy had significantly gone down. This was amazing news. We had always accepted it would just be a part of Grace's life. On Friday, Grace's class celebrated the Chinese New Year with Chinese food from a local restaurant. I did confirm that that food was peanut free. At 2:45 the school nurse called to tell me she thought Grace's cold was taking a turn for the worse and she had developed a cough. I thought that was strange since she didn't have a cough when I last saw her. Thirty seconds later the phone rings again. The nurse is speaking quickly but I hear it in slow motion. Grace's back and stomach were covered in hives. Giant hives-the size of quarters. Her cough was not part of a cold. She was now wheezing. She was having a severe allergic reaction.

I live a minute from school so I rushed up there. The nurse wanted to hit her with the epi pen and call 911. Here's where I slipped. I said no. I would take her to the ER immediately. There was some back and forth about this but I was insistent. This was a dumb move. School was dismissing and I didn't want Grace's friends to see her go out in an ambulance. I thought to myself, "I can get her to the ER in 5 minutes-faster than an ambulance." I can hit her with the pen if I have to. I know the school nurse well. I know she knows her stuff. I should have listened. Maybe in the back of my head I was thinking, "I give the shots." I honestly don't remember.

Grace was kind of loopy-for lack of a better adjective. She complained her stomach hurt while Luke kept yelling "go faster mom!" I silently cursed my environmentally friendly car and it's inability to accelerate at lightning fast speed. I tried using Siri on my iphone to text Tom but unfortunately Siri was busy or something because she "could not process my request." A failure of technology all around led me to use words that I hope do not find their way into my children's vocabulary.

We got to the ER and they took us right back. Grace's sugar was up to 385. In the back of my mind I'm thinking, "Who cares." But it sent the nurses into a tizzy. "When was her last insulin?" "We'll get an order for insulin to cover the high!" "What was her number this morning?" It took every ounce of strength to not freak the hell out on them. I know they don't see a sugar like that every day but DID YOU NOTICE MY CHILD IS WHEEZING AND COVERED IN HIVES????? We got back to a room and saw a physician's assistant. She rocked it. She wanted to give an epi shot immediately but she was as cool as a cucumber. Wasn't concerned about that 385. She told me to run the diabetes show. She asked a few questions to make sure I had it covered and concluded-let us know what you need. I agreed and began to realize I had just played with fire by not letting the school nurse give the shot.

An epi shot is a big puppy. It would make most adults cringe. I silently gasped. The nurse did not hide the shot from Grace who began sobbing "No more needles." I insisted they administer it in her leg. They wanted an arm but I told them the poor kid wouldn't be able to lift her arm. They got her leg ready and all I could see were all the little bruises on her leg from her insulin shots. Grace was sobbing harder but not fighting it. I surprisingly kept myself together.

They began talking steroids and I immediately remembered Grace's T1 friend William who had to be put on steroids and what a nightmare it turned out to be. His sugar was in the 500 range and he was in and out of CHOP. I paged our edno at CHOP and I knew by the way he picked up the phone the situation was not good. His voice was urgent-his voice is never urgent. We discussed the impact of steroids. He was deeply concerned for Grace and ran through what to expect for the next 24 hours (crazy highs). He concluded by saying try to push them to keep Grace off steroids and get him back on the phone if I had to. He also said to page CHOP allergy (which I did not). I can only handle so many CHOP doctors at once.

In the end, the ER doctor kept Grace off the steroids arguing more harm than good would come from it. We would wake Grace for benadryl in the night and take it from there. The doctor spoke so softly to Grace. I was surprised how much time he spent with us. His ER was hopping-it was packed with patients and people crying in the hallways. He spoke in an almost whisper-like voice saying he understood what a drag T1 is and a food allergy. He was trying to hard to make a connection to Grace but she just stared at the ceiling and nodded every once in a while.

We walked out of the ER and Grace told me she likes CHOP's ER better. They have more games, check in on you more, and have better TV. And boom-she was back to normal. Squealing and laughing on the way home, demanding I play her music on the radio-while I stared numbly out the window.

I apologized to our school nurse and explained that I basically panicked. She completely understood but we both agreed that if there is a next time, she's going to administer the pen shot. In the end, no one is really sure what happened. There may have been peanut in the lunch. Or, it may be a new allergy. On Friday we go back to CHOP allergy to discuss what happened and maybe run a few more panels to see what's up. My take away from all of this is to give up a little of the control I have over Grace's health. I also took away a realization of just how many people care about Grace. Our school nurse called twice while we were in the ER to check on her. Her endo checked in all weekend by email to see what her numbers were doing and offer advice as to how to adress the highs and lows we were seeing. Her pediatrician received the ER report and called on Tuesday to make sure we were all ok. In summary: give up some control and let the people who care about Grace and have the medical training to help her do their job.