Monday, June 6, 2011

Child Updates

We went to the insulin pump class on Thursday  night, and we looked at all three of the pumps that Penny's doctor recommends, and listened to the information session, and learned quite a bit. Penny and I both got trial infusion sets put in our stomachs (with bright pink connectors for our tubing!) and we talked to the company reps and the nurse who ran the session and generally filled up on information. (Alex, by the way, was really fantastic. He was a little wiggly, but happy enough to play with "his" iPhone during the presentation so Matt and I could listen, and he was more enthusiastic about going to look at the pumps than Penny was, for whatever reason.)

Matt and I eliminated OmniPod as a candidate fairly quickly -- the technology was cool, but using it was going to result in wasting a lot of insulin (you have to put a minimum of 80 units in the pod when you activate it, a pod is only good for 3 days, and Penny usually uses less than 15 units a day. Even if you allow for us stretching it to 4 days, we'd still be throwing away more than a day's worth of insulin every time we changed it out). There are some other factors as well -- like having a fairly large plastic bump attached to your body. I could see a teenager or adult being able to disguise the pod reasonably, but the pod looked huge next to Penny.

So we were left with the Animas Ping and the Medtronic MiniMed as our candidates. Both of them had some great features (the Animas is waterproof and has a foolproof device for set insertion, while the MiniMed can be integrated with CGM sensors and makes hundreds of skins for customization). So Matt and I spent some time Thursday night and Friday reading brochures and hitting up Google for reviews and answers to questions, and I think we're about 90% settled on the MiniMed.

By Saturday morning, Penny was complaining about her infusion set itching, but it didn't last long. We went over to Adin's after Alex's nap to join them in the pool for a couple of hours, then had hot dogs for dinner.

Sunday morning, as I was adjusting my jeans, my thumb caught on the edge of my infusion set and pulled it right off, even though we were "supposed" to leave them on until that evening. I guessed the chlorine had affected the adhesive's ability to stick. When I told Penny, she showed me her set, and it was mostly pulled free, as well -- the cannula (the tubing that rests under the skin) had been pulled free, and the rest of the set was hanging by some of the adhesive.

"I'm sorry," she told me. "It just itched so much, and I scratched it..." When I pulled the set the rest of the way off, there was a large patch of bumpy red skin, exactly where the set had been attached. (In the picture, the little red dot is where the cannula had been, and then there's red bumpy rash above and below.)

Which means she's either allergic to the adhesive, or at least has a sensitivity to it. It shouldn't be too surprising; I've had bad reactions to long-term adhesives in the past (though I didn't have any issues with this infusion set).

Which is... a problem. We can hardly ask her to have an infusion set stuck to her skin all the time if it's going to give her a rash like this.

I'm not sure exactly what we do next. I'll call the endocrinologist's office today -- they have to have encountered this before. If I had to guess, I'd say they'll suggest trying a set on some other, less-sensitive locations, like the back of her arm or her thigh; or maybe there's a (probably more expensive) version of the set that we can try. At worst, I figure they'll tell us to put off the pump for a year or so and try again later. Which would be a disappointment, but... well, there's not much else we can do, is there?

The rest of her Sunday went well, though -- she went to a friend's birthday party in the afternoon, which was a swimming party at the YMCA pool, and she even managed to pass the required swimming test (swim one length without stopping, then tread water for one minute). As Matt said, if there had been a letter grade, it would have been a D-, but it was passing, nonetheless! So we'll encourage swimming trips this summer so she can get more practice before she and I go to Mexico and spend hours every day in the resort pool.


Alex has been really kicking butt with the whole potty training thing lately. I haven't mentioned it much, because it's one of those tedious journeys that's hard to define the end of, but just lately? Much butt kicked. He's figured out how to hoist himself up onto a "real" toilet seat, so we'll be able to get rid of the nasty little toddler potty altogether soon. Yesterday, he told me when he had to go to the bathroom two or three times without my having to prompt him, which is a huge development, from my perspective.

When he'd been down for his nap for about an hour and a half (just as Matt and Penny were leaving for the birthday party, in fact) he woke up and started calling for me. I heard "go potty" over the baby monitor, so I ran up the stairs to get him. Good thing, too, because Matt had put him down for his nap in his underwear instead of changing him into a pull-up. Astonishingly, he not only woke up and called me to take him to the potty, but willingly went back to his nap when he was done!

He did have one accident last night -- he said he had to go to the bathroom, then went in and apparently spent too long trying to get the light turned on and lost control before he could get his pants down. (At least it was in the bathroom, which is easy to clean up!) And it was right before bedtime, too, when his self-control is weakest. We didn't scold him for that one at all; his intentions had been good; he just hasn't learned to judge his timing yet. And up to that point, he had been a full two weeks with no accidents! (Not counting nighttime, when he's still in a diaper.)

We need to get the boy a proper bed soon, so he can get up and go to the bathroom on his own. I think he's just about there.


Heidi / D-Tales said...

Wow, pumping! I'm excited for you. I had no idea that the OmniPod requires 80 units. That's a lot! We'd end up wasting tons of insulin too.

Lorraine from This is Caleb has written about adhesive issues and skin rashes before. I know Caleb was having reactions to the Dexcom adhesive, but I'm unsure as to whether he was reacting to the OmniPod adhesive, too. Regardless, it might be worth reading what she has to say. For a while, Jack was having issues with the Dexcom adhesive, but he's been fine for a while now.

Also, I know a lot of people use various products (Mastisol, Skin Tac, etc.) to make the infusion sets last longer. We just started using Tegaderm with Jack's Dexcom to improve the adhesive's longevity. A friend whose daughter uses the MiniMed is the one who suggested Tegaderm to us. They use Tegaderm to make her infusion set last longer.

High five to Alex! Sounds as though he's doing great!

Becca said...

She'll be fine - some sets can be used with your own tape instead of including adhesive pads, they're generally cheaper too! Medtronic sof-set is one I've found in the US although I'm sure that there are plenty more.