Thursday, August 19, 2010

Pump woes

Where do I begin? I know it seems like every post is me bitching but its not. Its just right now are going through such a transition and we have hit a diabetes wall sorta.

Justice started pumping with the Accu Chek spirit in June of this year. This was not our pump of choice. We knew we wanted the MM with CGM but due to NO insurance, and MM asking for 50% for a cash pay, we knew we had to explore other options. My dad found out about this pump, the Accu Chek spirit. Small, does the job, comes with a back up and they can finance it! Holy Pumps Batman! This is great! So we proceeded to go ahead with it.

I got a lot of negative feedback from people, and our endo was not at all familiar with it. Her only concern was the basal increments were by .1 and she felt that was not small enough for a child. But we explained its this or nothing. She agreed any pump would better than MDI for him at this point. Justice has very unique (like all diabetics) needs. He shows insulin sensitivity during the day or after an active day, and insulin resistance at night. It became a battle with lantus, one that we just were not winning. Even though his A1Cs were always between 7-8 we knew had to stop these erratic lows.

Anyway back to the pump. All papers done, first payment made, supplies ordered, and the pump was shipped! Excited doesn’t even BEGIN to explain how we felt. This was going to be a start of a new life, a new chapter of diabetes, one that would prevent 70% of lows, and give him more freedom. We were made aware of the risks of DKA with a pump, at first I almost said forget it. I was so scared. But after talking with some amazing D moms on twitter, and our endo I realized if we stay on top of it like we are, and are diligent in his checks like we are, and inspect his site and pump daily we could prevent it. A low? You cant see coming, it just hits you. Lows are more dangerous especially at night, and this was what we needed to help us.

Ok. Pump arrived, we waited 2 weeks and got the training on a lazy Sunday. As soon as training began so did Justice pumping. There was no try it first, we jumped right in. The first 2 weeks were INSANE. So scared of him moving and pulling out the site, or tangling the tubing. Everything was a fear, we were all so new to this.

We are now 8 weeks in and I can honestly say I feel like a pro. We all do. We know when to change the site, when to reprime or replace tubing, when to trouble shoot for highs, how to use temp basals for lows or resistant highs (which is the best feature of any pump by the way). We felt confident! EXCEPT we could not fill a cartridge without bubbles.  Not just me, hubby too. We would fill and empty fill and empty and just keep trying to get it perfect. Finally we decided screw it just fill the sucker and lets prime the bubbles out. So we did.  Not even 3 days into the new cartridge bubbles would appear! In cartridge, in tubing, in adapter connection. It became insane. It caused a few 300s, and sleepless nights. I cant tell you how many times we called pump support and had tubes, sites, AND cartridges replaced. It didn’t matter.

I then spoke with Sarah my friend who had used the Spirit before and she had the same issues. We kinda came to the conclusion that some kind of measurement was off whether that be with the introducer needle or cartridge and it was causing air to get sucked in. Even the Accu chek rep said he had other complaints about it. But what could we do. Grin and Bear it.  I had learned of the Animas Ping, their Access program and how amazing this pump was, and how so many have switched to it and LOVED it. I was determined to figure out how to get it but I knew it wasn’t gonna be easy, we have no insurance.

SOMEWHERE IN THE MIDDLE OF THIS WE GOT MEDICAID FOR JUSTICE!!

All of a sudden out of nowhere Justice started running really high at night, we did some overnight basal testing and saw the reason. Endo said ok lets increase basals here, and here, and lower here. Ok great right? WRONG. Justice crashed. Night time lows are the worst, trying to wake him and get him to eat something cause the milk isn’t fast enough. Anyway,I called Endo and she said ok lower it here and here. Call me back tomorrow and let me know how that went. All the while she kept saying “I wish he had the Ping “.. I just ignored it. Cause yes we had learned of the Ping and wanted it but we knew it wasn’t gonna be an easy or overnight process. New night, new basals. He spiked and crashed in the morning. I spoke with the Endo for almost 30 minutes. “Alexis, my issue is this pump only adjusts basals by .1 its too big a jump in either direction. He needs a pump like the ping, with smaller dosage increments”. I explained to her we had just got Medicaid and I had already asked Ping to start the paper work.


Now Justice is not needing all that insulin at night, all of a sudden his needs have gone from around .6/.7 basal to 0.39/0.49 (when a temp basal is set on the Spirit, it shows the exact amount being given per hour when it's increased or decreased)! I'm starting to think it was a growth spurt. But dealing with these basal settings is not making it easy. The temp basal rates allows small small increments, but regular basal profiles do not. Temp basals stop after 4 hours, so we have to restart them every 4 hours.

I am babbling now. The point is we are still waiting for word on the Ping, please keep your fingers, toes and eyes crossed for us. I am determined to get him this pump and after that a CGM…keep watching!

4 comments:

FatCatAnna \\^^// said...

That is the one reason I went to the Animas (Ping, 2020) - the small increments of insulin that we diabetics need to make things perfect for us (plus it's small/neat colours/it's waterproof). Hoping that things come through for you - keep up the fight - it is soooo worth it - especially if Justice can have better control of his blood sugars.

Sarah said...

Keeping everything I can crossed for you guys! XO's!

Reyna said...

I found you from Lora's Blog...My Diabetic Child...LOVE YOUR BLOG!!!

Alexis-Nicole said...

Anna yes it is! I am so anxious waiting for word from Rep if medicaid approved it or not! Good news if they didnt, I can get a refund on spirit and finance the ping! My dad agree to do it for us!

Thanks Sarah!!

Reyna, you totally made my night when I read your comment last night! I wasnt sure how other felt about my blog. Thank you for your amazing words!!

Celebrate With Us!