Thursday, November 12, 2009

The Infusion Set

I need to start this post by making something very clear. When the princess was diagnosed last year and we didn't have any insurance I have never been more scared in my life. To know that I would have a child that would need constant medical attention that could possibly come out of my pocket, and know that it isn't cheap, was enough stress that every time I thought about it I would break down in a sobbing, boogery mess.

Then in January we were finally approved for Medicaid.

I have since been super grateful. All of her medical supplies have been covered at 100%. Even the Dr. visits are covered. Even her pump was covered at 100%!!! You can't get more lucky than that! So with what I am about to complain about please know that I am still grateful!

Ok so here it is. The other day I called the Diabetes Specialty Center where we get all her supplies from. I hadn't received my monthly order yet and I needed to do a site change. When I called them they informed me that they had been audited by Medicaid and they found out they have been giving out the wrong infusion sets. They had a different kind that they were going to send me. I could hear a little hesitation in the girl's voice so I had to ask if there was a big difference in the sets. She said there was a big difference.

Let me show you!

Here are the infusion sets that we have been using. They are the Animas Inset 30's. There is a plastic piece that the connects to tubing so that when she is in the bath or getting dressed it can disconnect really easily. This picture shows the needle in it (just because I still need to use it) but the needle comes out and a small tubing or the cannula stays in her skin. Kind of like an IV. The entire part is sticky so it sticks to her skin really well.

Now here is what we are having to switch to. They are called the Medtronic MiniMed Polyfin with wings. There is nothing to it. There are big differences here. The needle stays under the skin (the entire plastic piece on the end is covering the needle. The plastic piece comes off. It is just the needle that stays in no cannula). Those little wings on the side are not sticky. So that means there is no way for it to stick to the skin. We will have to use this sticky medical tape to have it stick. The other big change is how it connects to the rest of the tubing. The end if this set just connects directly to the end of the tube.

Now here is why I am so scared to use them. She is 5, how in the world is this going to be comfortable for her with that long of a needle under her skin? With nothing being sticky on the set it's self I can see the tubing getting caught on something and it just pulling right out! To top it off they don't have kid size tubing. The tube is almost the entire length as her entire body. This will get in the way a lot! Then another concern is when I disconnect her to take a bath how are we going to stop water from getting in the tube? They are not kid friendly at all! They don't look comfortable, and honestly pretty old school.
I hate complaining about something that I get for free, but isn't my daughter's comfort supposed to be my first concern?
Guys tell me what you think. I am scared to death to use these things.


TravelMama said...

Can I just thank you for opening my eyes to the insanity of diabetes. I had no idea it involved so much CRAP! I feel for you and every parent and sufferer of this terrible disease. Way to get the word out. I'm glad to be more aware.

Wendy said...


That is about the most archaic, ridiculous, frustrating, horrible, thing I have come across in a very long time. (aside from H1N1, of course!)

I'm not sure when these sites were being used, but alot has changed since then.

Talk about risk of infection! I can't believe those are even

There's another way. We'll find it.

Kelly said...

FIGHT FIGHT FIGHT!!! There is NO WAY you should have to use those things on a small child!!

In case you didnt know, I appeal insurance denials as my day job :)If you need my help I'm here! Just say the word......

Cheesesquid said...

i was thinking of the water thing when i saw it, even before reading the whole post! those are not kid friendly at all! your daughters comfort should come first.

i don't know how the Medicaid system works, but is there anyway you could call them and ask if any other types of sets are covered?

katerina said...

I would make a fuss! I think there is a big difference and I believe you shouldnt agree to the change however grateful you are.

phonelady said...

wow I feel for you . I am wondering if you could put her back on mdis for a while till you get this straightened out . Then again you might never see the straighten out part . I hope you get it worked out . I would seriously change her back to shots before I would do the set thing they gave you . there is no way a 5 yr old could handle that .

Cindy said...

Hey, Chari's sister here again. I can't even imagine anyone having to use that. My husband is an adult and his tubing still gets stuck on everything! I don't know if he ever even found a tape that works well enough, plus it hurts to pull off even with no hair stuck to it. Ugh, I'm sorry! I wish I had some advice, but good luck!

AjsMommy82 said...

Alivia has Medicaid also and it is a HUGE blessing! But yes they tend to make diabetes a tad more difficult! We can't use the meter and test strips we want or even the lantus pen. But good news Shannon they aren't doctors and they don't have final say in the medical decisions of your child, you can appeal their choice for infusion sets you and your dr will have to write letters stating why they don't work for your child. 9 time out of 10 you'll win. We fought about the test strips when Alivia was 1st dx, they said we could only test her 4-6 times a day they wouldn't let us have any more strips because it was their "standard" our endo wrote them a letter and a few days later Walgreen’s called and said they had 250 waiting for us.
Good Luck & Don't give up!

Meri said...

Amen to what everyone said. Don't stand for it. If you have to, go to a different diabetes educator that hasn't been audited and have them get you the right ones, and then fight! Those are sick and wrong. You can do this! Good luck!

The Piquant Storyteller said...

Holy Crap! I didn't know anyone still made infusion sets that required the needle stay in.

Worry about the needle. Don't worry so much about the water. I see there is a quick release. That's how mine are. Water does NOT get in the tubing.

The tape issue . . . I have to put two kinds of tape over my infusion sets. The wings on mine are sticky but they are little so I put on a piece of tape with a hole in the middle that goes over the back of the cannula. I don't know how to describe it since it looks nothing like the infusion sets you're getting. Anyway, then I put on a sticky piece of dressing over the top. That top dressing sometimes stays and sometimes the adhesive disintegrates in the shower which I find really irritating.

I agree that you need to talk to your doctor. No child should have to keep a needle under her skin.

How the hay do you even insert that infusion set? I am so sorry Shannon. How do you live every day with the courage you do? Good luck. Heavenly Father is taking care of your family. I know something will work out.

:) Tracie said...

Eeewwwww! I don't think so!

Sounds like Kelly can help with wording and proceedures for appeal. Unless people live it, sometimes they don't get it! Go Government!

Shamae said...

Wow! My goodness that doesn't look fun! I would appeal big time too! I would consider going back to shots too instead of using that. Diabetes is hard enough and if those are going to be pulling out and causing trauma...well I would try to avoid it. I'm sorry!! Fight it! Talk to her doc! HUGS!!!

Becky said...

A friend sent me a link to your blog...I am a fellow D mom and LDS as well. I am appalled by this. Please let us know how this turns out. This is what is ahead for all of us if this health care bill passes. It is atrocious!