Tuesday, March 31, 2009

Complete Devastation

Where do I begin?
I've just turned Kacey's world upside down and she's sitting here with tears streaming down her face and there is nothing I can do about it! (Damn you, Cozmo!) Right now, I'm mad, upset, sad, frustrated and it's so hard to explain all the emotions I'm feeling right now. What is wrong? I'm glad you asked!

Our CDE just called to talk about changes this week. No changes since she is sick because the numbers are all over the place. Well thats good :) BUT... (ugh I don't like but's) I wanted to talk to you about Kacey's Coz. She went on to talk to me about how Cozmo was not making anymore pumps. We have 30 days to return our pump and she thought it would be in our best interest to talk Kacey into returning Herbie because she had this feeling that if something happened in 2-3 years and we went to try and exchange it, there wouldn't be anymore pumps. My next question...if they run out of pumps then what do they do? Her reply... Say I'm sorry? She said they talked to the reps from Cozmo and they suggested that anyone that purchased a Cozmo in the last 30 days, return it because once the ones they have in stock are gone....they're gone! She said that she would give us a Cozmo to borrow until our new pump came in and she would meet with us next week with a MiniMed and an Animas (we're not interested in OmniPod) and Kacey can press the buttons on those and decide between the two. She even offered to come to a closer location for us since the hospital is such a long drive. (We just love her!)

Right now...all I'm feeling is complete devastation! Having to sit down with Kacey and tell her Cozmo went out of business and we have to send Herbie back is like telling her a pet died! All she did was cry and I don't know how to console her. Her first question....Do I have to do shots again? No! We get to borrow a pump until the new one comes. Her second question...Which pump do I choose? I didn't know how to answer that! I did my homework when it came to picking out Herbie and I got info from every company and I've had Cozmo on the brain for so long and now I feel like I'm starting all over again! I feel like I need to reach out to the Diabetes OC and ask for help. I don't know which pump to help her choose :(

So basically, we are starting all over here! We have the choice of MiniMed and Animas. So PLEASE all of the pump users out there...help me with pros and cons of a new pump!

Ultimately, I'm so sad for Kacey! I'm sad she has to start all over. I'm sad that we got our Cozmo a week before they folded. Why in the world would they even send us a pump? I'm so lost :( So all the pumpers....please help me ease Kacey's pain and give me some advice on the pumps so I can help her through this!

I dread the day we close the box to send Herbie back!!! **cry**

18 comments:

Shamae said...

Oh Jill. I am so sorry for you guys. Kacey, you little sweetheart, I am so sorry you have to give up Herbie. I know how sad Sydney would be if she had to give Daisy back (that is her purple pump). Kacey I want you to know that Herbie wants you to be safe and happy and if you have to give him back, Herbie will be happy to go back because he knows it is probably a good idea to have a pump that can be replaced by the company. Herbie wants what is best for you. Big hugs sweetie.

Jill, I am sorry you are back to square one. Really you are just going to have to do research to find the best fit for you and Kacey. I can tell you about Syd's pump though. We have the minimed 522. For us, it was a decision between Animas and Minimed. Both have great features. My ideal pump would be one where I pick and choose my fav features from each pump and just create my own. I don't know about the Cozmo pump and it's features so I don't know what you are giving up...sorry if this is redundant. For us, the minimed pump is very very simple to use. Sydney is 5 and can dial in her carbs. It only has 5 buttons and all are clearly labeled. It has made training other people on her pump very easy. It comes in different colors and many accessories can be purchased...they have LOTS of "skins" to personalize the pump. It has lots of safety features like max bolus. Syd's is set at 5.5 units which means she can never be given more than that much in a setting...it helps reduce the risk of over-insulin'ating' her. (lol like that word?) It has lots of different alarm settings with its safety features. It is one of the smaller pumps...looks like a pager. It has the quick-sert insertion set which I LOVE. It makes inserting so much easier for us. The drawbacks are that the smallest tubing is 23 cm which is a little longer than Syd needs so we have to wrap the excess around her clip.

Overall though, I have really loved the simplicity of this pump, its ease of use and it's great tech support. We have called their 24/7 help line at 11 pm before and got to talk to an actual person. This is awesome. A huge deciding factor for us is also that one of Syd's educators has Type 1 and she has this pump...so it helps when we need help to go to someone who uses this pump on a daily basis. We have been so happy though...no complaints. I've already talked to you about her CGM. That is a different story though. You don't have to have the CGM with the minimed pump, but I like that option. Also, this pump comes with a One Touch meter that "talks" to Syd's pump. I love that feature too. It also comes with a key fob for wireless dosing if need be. We don't use this feature but it is pretty cool.

Ok so overall, we love the minimed but really you are just going to have to do more research and see what will be the best fit for your family. You have my email, please email me if you have any questions. Take care and hugs!

Amalas said...

I have been wondering what company to switch to as well and I will probably end up with Animas.

1. I love my Cleo infusion sets and they are not compatible with Minimed.
2. I like to use my hips for infusion sites and an Omnipod will just not work there.
3. I have a Dexcom and Animas is working with them on an integrated solution.

It was a pretty easy choice for me, but YDMV.

Jill said...

Shamae~ Thanks so much for all the info!!

Amalas~ Thats what our CDE told us...if we went with Animas then Kacey can still use the same sets.

I'm still so torn and she's still crying :(

Rachel said...

LOL well Shamae beat me to it!!! I agree with everything that she said. Another option that I like with the minimed is that I can download all his number and dosage on the website. That way, when there's a problem, I upload the pump, call his diabetes educator and she can log in and see what's going on. Lots of info and charts.

Another thing that I like, is that we can lock the buttons. So Tristan can't play with it (not that he would and I think that he figured out how to unlock it) but it's good when he's sleeping, he can't accidentally give himself insulin.

I also think it's for the best. If something happened down the line and there were no more pumps, then Kacey would have to go back to shots for a while. This way, she doesn't have too.

Hang in there Kacey! I know that you are sad and it's frustrating but in the long run it's better. The number 1 priority is your health.

Kassie said...

This is what folks don't get - these are medical devices which are pieces of the diabetes business puzzle, and the demise of Cozmo is a potentially bad thing for competition and innovation. But to us, that's not what matters! They have names! They are part of us! They take some time to learn and master and integrate into our lives and to have them go away just plain rots. I wish Cozmo had scaled back their sales of new pumps sooner - I get how they couldn't b/c of business reasons but I think it's awful that folks are just getting used to their pumps, only to have them taken away!

My warrenty is up in a year but since my son is starting pumping soon, I'll just go with whatever works for him. I'm thinking Animas at the moment.

hang in there!

Allison Blass said...

I am on the Minimed and have been for 9 years. I have never had a problem with their system, I find it very easy to use (though I've used the pump ages 15 to 23, so as a grown-up, I might be biased). I also love that it's 100% integrated with the CGM. I love having one gadget, and not 2. I've never had an issue with the sets, and the covers for the pumps are very fun. I had jelly beans and had a lot of people tell me how cool it looked. There are a variety of other covers too.

I can't really think of any cons actually! I have babysat kids on all the different pumps (save for Omnipod), and I personally still prefer the way Minimed structures it's menu. Everything else seems so odd, but again, it might just be because I'm used to it.

Jill said...

Rachel~ Our CDE said the same thing about if something happened to it and going back to shots. Heck, we've only been pumping insulin for a week today (wow seems like longer) but within this one week, she was already crying because she didnt want to go back to shots. Thats the only way I got thru to her was to tell her, if Herbie broke in 2 years and we sent him back and they didn't have anymore pumps then she would have to go back to shots for 2 years because we only get a new pump every 4 years. She cried harder and said she didn't want to go back to shots! (amazing the freedom the pump gives!!)

Kassie~ I sooooo agree. This just isn't a piece of equipment anymore. We had to go thru a whole process to get Herbie (waiting for honeymoon to be over, pump class, pump training 2 times, saline trial) and so he has become a part of her and it's so hard because it's like losing a friend.

We're back to feeling scared and now having to relearn an entirely new system. I've pulled out my info from MiniMed and Animas and I let her look it over. All she did was look at me and say "They aren't like my Herbie!" So we're back to square one because I know when we send Herbie back that there wont be another Herbie. A new pump means a new name, new features, more learning and an adjustment period.

We meet the CDE on Monday to see the other pumps. We will box Herbie up then and she will get hooked to the loaner pump to use until we get her new one in.

THIS REALLY SUCKS!!

Jill said...

Thanks Allison! We were posting at the same time :)

Amy said...

Jill- I am SO SORRY for you and feel SO BAD for Kacey. Lots and lots and LOTS of hugs and prayers to you guys today!

Shannon said...

I feel your pain! It really is like a little pet dying on you.

Let me know which one you decide on.

I was also wondering what would happen if they run out of pumps in the next 4 yrs, so maybe we should get a move on choosing as well.

Molly said...

Jill,
I am upset about the whole thing as well. I love my cozmo and can't even think about another pump. I have to wait for the warranty to expire before my insurance will allow me to get another pump.

I don't know much about Animas.

I do know that the lawsuit from Minimed was some of the reason that Cozmo is gone...so I'm opposed to using their product. I have always been frustrated that minimed patented so many things, limiting what other pump companies can include on their pumps/infusion sets. (like the spring infuser that minimed has. No other company can create anything like that because of trademarks)

sigh.

I guess if I had to choose now, I'd pick Animas.

Cara said...

Please tell Kacey I'm sorry. I hate it for her. :(
That sucks for both of you. I know you were really happy w/ the Cozmo.
I've never had an Animas, but I will tell you that I love my MiniMed and my experence w/ their customer service has been fantastic.

Penny said...

Riley has an Animas 1250. We really like it. I love that it is waterproof.

They have a new pump now, the Animas ping (tell Kacey it comes in pink). And, it comes with a remote so she doesn't even have to take the pump out to dose you can just do it with the remote.

I never considered a Minimed really. For one, I don't like that you can only use their sets. We had to try several sets before we found what was right for Riley. What's funny is that we ended up using Animas sets anyway.

I feel like I'm rambling... I like the Animas and unless some really cool inivative pump comes out between now and then we will be getting the Animas ping when Riley's warranty runs out next March.

Jill said...

Thanks Amy & Shannon :)

Molly~ You've been on Cozmo longer than us so I can only imagine how hard it is for you too!

Thanks Cara :)

Penny~ When I was talking with Kacey earlier, I asked her what feature she loved the most about Herbie because I thought maybe if one of the other pumps had a similar feature then she'd lean that way. She said "I like when Herbie beeps at me to tell me to retest when I'm low." Of all things...a simple alarm she loves! Does Animas have the alarms you can set to remind you to retest 15min after a low or 2hrs after a high?

Thank you ALL for your support! Kacey finally stopped crying and we've been able to talk about it more. I've tried to stay as positive as I can but I'm just as attached to Herbie as she is and we love the Cozmo features! We go Monday to play with the other pumps :)

No Sugar Needed said...

We are staying with Cozmo for now. Nikki's appointment at Children's isn't until 4/30 - guess we'll talk to them then. We have had Cozmo for longer than 30 days so I just don't know

There is an article about this 'crap' on No Sugar Needed if you want to read

Give Kacey a hug

Insulin Pump said...

God bless you.But I think that you have to use Insulin Pump,it plays a very big and helpful role in living a healthy life with Diabetes and Insulin .
# It delivers insulin like pancreas.
# It relives us from multiple pricks.
# Easy to operate.

Penny said...

Jill,

Riley's Animas does not have alerts like the Cozmo. It is my understanding that the ping has some alerts, but I'm not sure what they are. You may need to ask someone with a ping about it. Sandra's son, Joseph, at A Shot in the Dark, just got a ping. Maybe she can answer that question for you.

Jenny said...

Hi Jill! I am so excited to have found your blog page! My 4 year old was diagnosed with Type 1 3 weeks ago. He is doing really well with the finger pokes and the insuling shots...he's a tough cookie! One thing that we are dealing with as this particular moment is his extreme moodiness. He is almost like a different child sometimes and it's breaking my heart. Do you think it's the Diabetes itself (trying to get sugars regulated and they are actually pretty normal lately) or the obvious fact that his "once perfect" world has been turned upside down. Any comment would be greatly appreciated! Thanks, Jenny