Wednesday, May 18, 2005

Parents of Prospective Pumpers

Try saying that three times fast.

So, upon waking this morning I found a number of wonderful, encouraging comments in response to last night's post. Thanks guys. I feel better already. I wish I could say the same for Joseph-- his fever is up again. But we kept his sugar from going completely nuts last night-- just one spike to 257, that was stopped in its tracks with an aggressive correction. He stayed in the low 100's the remainder of the night, then dropped to 79 at 5am. Okaaay. We nudged his basal rate up a bit, and he was back in those low 100's...

It's a dance. And we're getting a lot better at it.

Now, this morning I also discovered a comment to a previous post, He Found Out, from another fairly new blogger-- Type1Dad. As per usual, I was going to respond to his response in a comment. But then I realized that his request for information about how we began prepping for the pump might also be of interest to others who were looking for the same.

Soooo..... here's the deal:

Yes, we did put in quite a bit of time in preparation for the pump. One of the first and best things I did was to subscribe to (see my very first link). These people are amazing. "Pumpers," as I like to call them, are an online community of pumpers AND parents of pumpers. There are almost 5,000* folks currently subscribed to this group. And I cannot say enough about the wealth of information and support they provide. Even if you're shy about posting, just following the threads will provide a ton of info. I was one who posted looking for answers, especially before we settled on a pump for Joseph. These people gave me an inside look at the various pumps out there, helped me articulate the important questions for our care team, and really just got us through the whole saline trial period.

It costs nothing to join, but they do have fundraising drives. I always contribute, because I think the work they do-- bringing people together who might otherwise have never connected -- is invaluable.

Moving on...

I also read several books about the subject. If you haven't read them already, start with:

Insulin Pump Therapy Demystified by Gabrielle Kaplan-Mayer

Initially, I looked at others (and actually starting reading Pumping Insulin-- see below), but found that reading this book cover-to-cover first was the best way to get my "feet wet" with the whole idea of pumping.

Next, I read:

Smart Pumping by Howard Wolpert

This is my favorite book on pumping. The writing is so well done, so accessible. It doesn't read like a text book-- more like having someone, a very personable someone, sitting there with you, explaining the basics. In fact, using this book, I was actually able to determine Joseph's starting basal rate, insulin-to-carb ratios and sensitivity factor before we even got the pump. And they matched the ones set by our CDE!

And finally, I read (and still consult):

Pumping Insulin by John Walsh

A fantastic resource, but very intimidating if you haven't read the previous two first. John Walsh is considered by many in "pumping" circles as the "guru" of insulin pumping. This book certainly bears that out. His website is also a terrific place to visit for comprehensive articles on the subject, an extremely useful pump comparison table, or just to buy books and other diabetic supplies.

The last component here, and it was really the first, most important, and an on-going one, was to spend time talking with Joseph about the idea of pumping-- exposing him as much as possible, without overwhelming him (which can be really hard, I know) to the whole concept. Then we did saline trials with three different pumps. The first trial was with a Minimed at a terrific ADA camp in October for newly-diagnosed families. I actually wore a Paradigm pump along with Joseph. Quite frankly, there was no way I was going to even consider having my son wear a pump without knowing first hand if it would hurt him. (BTW, it didn't hurt.) Next up, Joseph tried the Cozmo and Animas pumps in December.

Now, at times, Joseph did express some resistence to the idea of wearing a pump, but I believe that having faith that this device would be the best choice for him, and conveying that faith in every conversation about it, was key. After all, if he was not on board with this, there's no way it would work. And we would have certainly delayed putting him on an insulin pump if that were the case. Happily, it was not.

After thoroughly researching all of these pumps (and finding pros and cons with all three), and to further strengthen Joseph's commitment to such an important step, I decided to let him make the final choice. After all, he was the one who would have to wear it. 24/7.

Joseph chose the Animas 1200 . It was the smallest, lightest pump available. And extremely user-friendly. He loved it from the moment he started using it with saline. And, (for mom!) it had the lowest basal rate increment-- .025 units/hour. Because Joseph was (and still, apparently, is) honeymooning, this was an excellent choice. We are now back to running a .025 basal from 10 am to 8pm.

As a result of all of the above, we went into our training with confidence. We'd received our pump almost a month before the training actually took place, so we had some time to play with it a bit. Joseph and I had also messed with the virtual pump on Animas' website, so we were pretty comfortable with the real thing. At our training session, we came in with Joseph's pump loaded with a battery and already programmed. Ryan, Joseph and I had worked with the training DVD, practiced filling the cartridge (with saline, of course), loading it into the pump, and priming. The only thing that made me nervous was inserting the cannula-- but, I think anytime you have to stick something into your child, you're gonna be a bit shaky. Thank heavens we took to that quickly as well.

I won't lie, we've had some scary moments since Joseph started pumping. Just read some of my previous posts. But despite this, he still says that he will "never go back to shots."

There you have it. Sorry for the incredible length, but the process of choosing an insulin pump and learning how to use it-- of becoming emotionally ready to take this step-- can be daunting. Hopefully, this post gives you some guidance along the way.

If you have any other questions, just ask.

* this is a correction-- originally I posted that there were (only!) around 500 subscribers-- this is actually the number of subscribers to the parents-of-pumpers list alone.


Tekakwitha said...

Sandra -

First, sorry to hear everyone's so sick! Hope they all recover soon.

Second, what a great post! I wish I had all that information before I started. I was pushed promptly by my doctor and diabetes educator to get my pump as soon as possible. Luckily I adapted very quickly and was happy with the decision to pump and with my pump. It sounds like you son 'loves' his as much as I do mine!


Kathleen Weaver said...

Now I know who you are! Welcome to blogging.

Glad you like the Animas. I started with a IR1000 and am on a IR1250 now.

Hope you guys get better soon.

Sandra Miller said...

Thanks for the comments ladies.

While Evan is most definitely on the mend, Joseph still has a fever, but is feeling a bit better than last night. And, (knock wood) his sugars have continued to be pretty stable today...

Kathleen, yes we do very much like the Animas pump, though I'm excited about the prospect of upgrading to the IR 1250. Sounds like you're happy with it. Has it given you any problems?

Shannon said...

AAhh. The joys of sick days. May Joseph have a speedy recovery. I have to get my hands on "Pumping Insulin" by John Walsh. I know a parent who knows John and swears by his advice (her daughter is on Cozmo). Thanks for the other resources too!

terrilynn said...

Sandra, this was a really helpful post. Our "journey to pumping" has been derailed a bit, but hopefully it's temporary, and I'm sure I'll be asking for help/advice then!

Lynnea said...

I know this post was written quite a while ago, but I just wanted to thank you so much for writing it.

We are in the pump process now, and our clinic is giving us little help in choosing. Your post helped me see the route I want to take. On Monday I'll be calling my clinic with a few more questions and "firm requests"---to put it nicely.

Thanks again!! I'm loving the D.O.C.!!