J.J. holding his "dummy" pump. This pump has no insulin or saline in it. We are just trying it out for a few days to get a feel for insulin pump therapy.
Today we went to St. Paul for Pump Prep Class. It was a lot of repeat information that has been drilled and drilled since the beginning. Kind of seems like kindergarten talk at this point in the game. I suppose they are just making sure we understand all about carb counting, and what a hypo looks like and what to do with ketones, and hypers...and....and....and....
It wasn't until the very end.....almost 2 hours later...that we were given new info. We were shown how to hook up the pump....or insert his first infusion set. I asked that J.J. be numbed for his first insertion. I want this to be as attractive to him as it can right now. I don't want him turning away from it without even trying. They placed a patch of numbing cream on him, then J.J. watched another young man get his first infusion set placed.
The other boy didn't flinch and said it didn't hurt, which you would think would help J.J., but it didn't. J.J. for some reason got even more scared. Don't ask me why. He does that sometimes with his shots. We trudged ahead......I inserted his very first infusion set in his bum since that's the place he has the most fat right now. There was some pre-set fussing, but after I was done he said he didn't feel a thing. I don't want to be dependent on the numbing cream, so hopefully we'll wean off quickly.....but then again, if it's what it takes for him to be on the pump, it's what we'll do.
We put the set on his bum because he has the most fat there.
They put the pump on him without any saline, just an older model, dry pump They said in their experience it was more of a hassle than a help to have the saline in it. So for the next few days he'll just get to feel for what it's like to have this thing attached to him 24/7.
Doesn't it look huge??
It is kind of big for him. It was leaving marks in his stomach from the seat belt pushing on it. So on the way home he said he didn't want it anymore. I think a pump pack will be nice for him so it won't jab him as he plays. The first thing he had to figure out when we got home was how to change his pants. Then he had to figure out how to go to the bathroom.....he still pulls his pants down to his ankles!!:-)
The next few days should be interesting to see how this new gadget will work in our lives. How this will now change everything AGAIN.
As I was typing this J.J. was getting ready for bed and we noticed blood in the tubing. Not a whole lot, but enough to make me want to talk to someone about it. The nurse didn't mention anything about what could go wrong. That frustrates me right now.....I even said to Jason when we were leaving...."You know they make this pump stuff sound so easy, it's such a breeze, no problems, the best thing to happen to diabetes......but you know for sure there are problems and frustrations just like anything else." So anyway..... Yes, I am a bit concerned. I figure something isn't going right. It's not an emergency, so I'll wait until the morning to call the nurse. I'm glad we aren't "live" with insulin right now.
The clinic still hasn't decided about the donated pump. So we were not able to start the process of filling out paperwork etc. I just have this gut feeling that they are going to deny my request. Seems like we are somewhat "famous" in this clinic....no matter which CDE I talk to they always say "Oh, you're the ones with the donated pump". The CDE today hinted at there being liability issues....afraid we'll sue them or Medtronic if something were to happen. As soon as she said that, I figured they were not going to allow us to use the pump we have.
So I guess now I'm back to figuring out which pump. This clinic really pushes Medtronic....in their own way. Technically they can't recommend any pump. The CDE had a Medtronic "dummy" pump and infusion sets out before even asking us what we were looking into getting. Which begs the question....how in the world am I supposed to know what we should get??? They really haven't told us a thing about any of the pumps. I have a hard time buying a $25 item without a ton of brand comparison, how am I supposed to figure out a $6,000 item.
So that was our day with Pump Prep. I'm wondering if our 3 day trial will end up being an 18 hour trial. They may want me to remove the site. I want to take it out, but I also want to get a good few days under our belts so we can get a feel for living with this thing. Gee....just what I needed....more stress!! I'll keep ya posted.
4 comments:
The blood is probably due to the fact that nothing is running through the tubing. That happened to us also at pre pump start.
Riley started on a pump when he was 3. We've been pumping for a little over 2 years now. I understand your fears and frustration right now.
Riley has had all of his sets put in his backside. He just does not have enough fat anywhere else. Infusion sets come in all shapes and sizes too. Of course, with minimed you can only use minimed sets. With other pumps you can use pretty much any set you want.
The minimed does look huge next to his tiny body. Riley's Animas is much smaller than that. He wears his in pockets sewn into the waistband of all his pants. No one can see it until we pull it out to bolus. It seems to not get in the way as much that way.
As far as the blood in the tube, that shouldn't happen if he was actually pumping anything. Because he doesn't have anything going into the tube then it gives access for the blood to come out.
Riley pumped saline for one week before going "live" with insulin. We gave boluses with his pump just like we would if he had insulin. This helped us get used to using the pump before putting any insulin in it.
I'm sorry this has gotten so long. It's just I've been there and want to offer any help that I can. If you have any questions feel free to email me at pennylane5001@yahoo.com.
If the donated pump doesn't work out. I would totally recomend the Cozmo. Not just because I have one, but because it has a very simple and straight forward interface. I'm pretty sure they target it to parents of kids etc for this reason. It's so easy that JJ would probably even be able to do a lot of the pump things on his own with your supervision or course. Also you get a lot more infusion site options. For instance I have hot pink infusion sets, it may seem silly but it makes pumping a little more fun. To a 5 year old I'm sure it would be awesome to have a blue infusion set vs a boring clear one.
As for the blood, it happens occasionally.
Good luck with all of this.
He looks so happy in his picture! I love seeing a happy kid.
I hope you're able to get things figured out with a pump - whichever one you end up with. I really like my Medtronic, but JJ's looks really huge next to his little body. Mine felt huge to me when I first got it. Then I became accustomed to having it there all the time. JJ will get used to whichever one you choose, I'm sure. It just takes a little time. :)
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