To Pod or Not to Pod? To sleep or not to sleep?

We participated in our annual JDRF Walk to Cure Diabetes yesterday. A beautiful sunny day with a perfect breeze….couldn’t have asked for better weather! KC and Firefly had a great time leading our team of over 30 walkers.

At the end we headed over to the Vendor booths to visit our Medtronic reps…sadly, they left before the event ended.  But the Omnipod rep was there and caught the eyes of both KC and Firefly.  They each tried on the pods on their arms (a site they never would try with their Minimeds) and were stunned by how easy it was.  KC had said no to the pod in the beginning because she was afraid it was too big and bulky–but now she’s fan….she even wore the sample through a volleyball game, swimming and sleeping…she said she forgot it was there…

So here we go….

To Pod or Not to Pod?

Pros:

• ease of insertion (both girls filled the reservoir, put the pod on and started the saline themselves)
• little to no discomfort during insertion
• reasonable start-up cost ($150 for the start kit)
• freedom to swim and still get insulin
• no tubes to get caught on door knobs and drawer pulls
• no tethered pump to fall out of pocket or off waistband
• the Artificial Pancreas Project clinical trials are using Omnipods

Cons:

• uses Dexcom cgm not Medtronic
• CGM handheld device and Pod/BG handheld not integrated into one unit…must carry both
• we haven’t finished paying for our Minimed pump yet
• BG meter is Freestyle –uses different test strips.  We already have Bayer meters and test strips, + One Touch meter and test strips…now a third type?
• and the biggie….no mySentry type product for Dexcom
• unknown supply cost

The pros are tremendous. And I am leaning toward letting her use the Pod during the summer months if we get insurance approval.  Checking whether or not it is possible to  use the Medtronic cgm/mySentry without the Medtronic pump  just to keep our nights worryfree (relatively speaking that is)–I think it is possible because the mySentry receives the glucose info from the sensor transmitter….really need to find this out.

I know there are people who say “Just get a baby monitor so you can hear the Dexcom alarms”–well, first off the mySentry is so much more than just an alarm. It provides the glucose reading from the CGM, + information about how much insulin is left, time remaining before sensor change, battery life, and trends.  At any time during the night I can look at it and see the same information that is showing on KC’s pump. And I also find it hard to put a baby monitor in the room of an almost teenager…it seems like an invasion of privacy.  As I say again and again, I want her to live as normal of a life as possible and I shouldn’t have to use a baby monitor.

Why can’t any one pump manufacturer come up with the entire package?  Here’s what we (KC and I) want from a pump system:

•  a tubeless pump that can get wet
• and is combined with cgm in ONE UNIT
• one handheld BG meter/cgm/pump operator device with
• a remote monitor (with battery back-up)

In this day and age, is this so much to ask for? It’s not like I’m asking for a cure or anything?  Oh year, that’s right, while you are at it let’s get that done ASAP!

UPDATE###The Medtronic Guardian cgm will not work with the mySentry–once again a “brilliant” engineer didn’t think “gee, if we have two cgm systems then we should make both work with the mySentry.”  To clarify, Medtronic has the Guardian cgm which is like the Dexcom in that it has it’s own handheld device for operation and doesn’t speak to the pump; the Paradigm Revel cgm system is operated by and works with/speaks to the pump.

So I guess the decision has been made for us….no podding until a remote monitor/pod (aka patch pump) system is created.

One of Those Nights….and tonight is another one…

On night’s like this,I find myself talking back to our mySentry…and cussing at it. We’ve got a love/hate relationship, mySentry and me. Actually, I love mySentry and the fact that it alerts me to changes in KC’s blood sugar. What I hate is that I need to be alerted…what I hate is that my daughter had Type 1 diabetes. As I’ve stated before, most days, T1 is just part of our routine but then there are days like the past two days.

At 7 pm last night , KC was70 then by 11 pm she was 312. Correction by pump and one hour later she was 302. Another hour, and she was 294, which meant correction by injection. I tried to compensate for active insulin (or “insulin on board”) but not well enough….at 4 am the mySentry went off with a low prediction. She was 91; I cut her basal rate by 30%. At 4:30, she was 63. What would have happened if I hadn’t had the mySentry? First, I would have been afraid to treat the high for fear of the crashing low and if I had, well, how low would she have gone by the time my alarm went off at 6 am? And yes, I could have monitored the old-fashioned way by setting an alarm clock or timer to wake me up to check on her or I could have crawled into bed with her so I could hear her pump alarms. But what if I didn’t wake up?  It is impossible to sleep through the mySentry alarm-the first beep gets me as does the flashing ligh.

And tonight….300’s all evening until 9:30 then her BG was 48. She’s had ice cream and glucose tabs which brought her up to the 90’s but back down into the 70’s and dropping at 10:15. So tonight I’m trying something new….I’ve unplugged her pump and am waiting for all the active insulin to be gone…just letting it drip out. She’s afraid I will forget to plug her back in….so here I sit, typing away to pass the time.

“There is no living thing that is not afraid when it faces danger. The true courage is in facing danger when you are afraid.” L. FRANK BAUM, The Wonderful Wizard of Oz

March and April have flown by….KC turned 12 and #1 Son turned 15. And as I reflect on the past few weeks, “fear” is what comes to mind. New fears, old fears….I feel like I’m living in a constant state of fear. It’s kind of my basal rate…always there in the background. Which seems odd to me, because although I am a self-professed worrier, I am really a “find the silver lining” type of person. I’m used to always looking on the bright side on things. But not lately…maybe I just need to get those fears in writing and face them. So here goes:

– the onset of teenage driving in our very near future. #1 son can get his permit at anytime now that he is 15.

At this point, I have absolutely no idea how I will react when he actually starts driving. I can’t bear to think about it for too long. It is unfathomable.

– the always present, always unpredicable Type 1 diabetes

Most days, I feel like we’ve got a handle on it. Until….a volleyball game, or party, or bad site, or broken meter or insurance bill and so on and so on.

I remember the initial fears after her diagnosis. Fears for her future, fear about whether or not I could give my kid a shot, fear about the calculations that needed to be remembered, fear about making a mistake.

Then came the insulin pump. New set of things to learn; new mistakes to make. Now I can’t even remember how we managed on daily injections.

In August, KC’s endo told us we could adjust her basal rates temporarily to help battle lows and highs. What? Me change those numbers, even temporarily, without consulting a doctor? Are you nuts? But we tried it. And it helped. We have other CWD friends who have never attempted it even though they’ve been on the pump years longer than KC—fear is definitely a factor for them.
And in April, at her latest endo appointment, KC’s doctor suggested changing her bolus rates temporarily when she is going low from sports. WHAT? ARE YOU NUTS? And we haven’t tried it yet….too scary.

But these directives to be more independent scare me even more because we are being led to the day when KC manages this all alone. We are already on “send in BG results as needed” instead of at a set date. I panic trying to decide “should I call these in or wait a couple of days?” And I swear, I don’t know how people without CGMs do this….I’m not being paid by Medtronic (or given any samples etc) but I can’t imagine not having the CGM and mySentry. So guess what, KC “thinks” she might want to try the Omnipod for summers and swimming….did you hear my groan?

But as L.Frank Baum wrote in The Wizard of OZ “The true courage is in facing danger when you are afraid.” So to the cowardly lion in us all…Keep Calm and Carry On!