Drowning Out The Beep

"Just crank up the radio Mom ... you know ... to drown it out."

Dear Lord the BEEPING.



The Lumineers' Stubborn Love was cranked up a few levels.  The beeping was still piercing my tympanic membranes as we headed home from Joe's first day of Tim Thomas Hockey Camp...yesterday.

The POD, according to the alarm history, had stopped delivering insulin for about an hour and a half prior.  Joe could not hear the alarm, as his elbow pads and shoulder pads and helmet all must have muffled the sound.

Once we arrived home, I placed a new POD.  It was filled with about 100 units of Apidra.  Joe then headed for his All Star baseball practice.  He came to me during practice.  He felt the adhesive pulling as he threw.  I slapped some IV 3000 over the dressing edges of the POD.  About an hour later, he lost POD #2 at the pool.  UGH.

I dropped Joe home and headed to the pharmacy.  I could not bear to put in another one of those things without a different plan.  So, at the pharmacy, I didn't find much help.  I bought some "waterproof" tape.  So Joe's current POD is in and secured with waterproof tape all around the edges.  So much for "fitting in" between the freakish beeping and his mummified arm ...this thing is requiring a lot of extra support right now.

I texted our Omnipod Rep.  She recommended Skin Tac; samples are on the way. 

Despite site issues, Joe's numbers have been steady (like 70 to 171 kind~a~steady) even with 3+ hours on the ice and dry land training.  His basal has been decreased by 40% for the 6 hours he attends camp.  Breakfast is lightly bolused for (10-15 grams of it given for "free").  20 grams of Lunch is "free".  And an extra 60 grams of carbohydrates are consumed throughout his 6 hour camp day in the form of Kashi bars and Gatorade. 

Joe calls me with each blood sugar and we discuss the bolus amount.  He has to call me from the warm room as there is no cell service in the rink locker rooms or ice-side.

A day-in-the-life of drowning out the beep and taking diabetes to yet another hockey camp.

I Offered Him Some Baby Oil

A week ...or so... ago .... while at the local pool...

I had met a POD Lady thanks to my friend's astute eye in detecting diabetes paraphernalia.  Chairs and children were immediately navigated in order to make initial contact.  I asked the said lady if her "device" was an Omnipod; she confirmed.  I shared that my son was going to try out the POD in a few short days.  That was about the extent of our first encounter.

A few days ago... again... at the local pool...

"I'm looking for the bulge...look for a bulge in her suit...I think that is POD Lady." ~ Me to Dave.

It was her, confirmed by the bulge.  I, of course, made a bee line her way.

I updated her on Joe's POD start.  She gave me a tip that she dries off her POD every 30 minutes or so, while swimming.  I listened to her diagnosis story.  She let me know that the insertion needle on the POD doesn't retract fully and can prick if the POD user bends the POD-ed area a certain way.  During her diagnosis story, I immediately identified her "trigger" to beta-cell demise; a first she stated...that someone "got it".   I asked her about a possible "over-ride" function to suspend the beeping alarm that the POD makes when it is time for a POD change.  She stated there was no such function.  I thanked her for putting up with me.  She got it.  She gets it.  Her response was "it can be a lonely way of living."

I'm sure when she spots me in the future she will experience some sort of Cop Theme Song thought-feed with the lyrics of  "POD Mom, POD Mom...whatcha gonna do?  What ya gonna do when she comes for you?" 

Onto the POD...

Joe loves it.  He loves it for the freedom.  He is currently taking a little Dexcom break to enjoy just living life with only the POD. 

I am liking it as well.  I like the built in glucometer that uses Freestyle test strips.  The blood need is so minimal compared to the One Touch.  I like seeing my son free from tubing and free from a fanny pack.  I like seeing him "fit in".  Of course he "fits in" in a social sort of way, but it is nice to see him look a little more like his peers.  I know that probably is wrong to say, but it is truthful.

What I am not liking... first off I think I have an "over-ride" issue to add to all my issues.  I don't like that I cannot just change the I:C carb ratio during a bolus.  There are times that Joe may eat breakfast a little late (his breakfast ratio runs in the range of a 1:10 to a 1:12).  His morning snack ratio is a 1:60.  With the Ping I could just alter the I:C ratio before giving the bolus and the pump would re-calculate the bolus for me.  With the POD, I have to calculate out the bolus with ... like ... using MATH.

The other issue... ADHESION...



The POD adheres remarkably well (see video), except when Joe swims.  We almost went through two PODs in one day, due to swimming.  The second site was saved by a very~still~Joe and IV 3000.  Any suggestions for adhesion and swimming?  Torbot Skin Tac?  Mastisol?  Hollister Medical Adhesive?

A day-in-the-life of being a POD mom.

Losing The "Visible" LEASH

While "Cutting The Cord" has a nice ring to it, I think perhaps they could also name it "Losing The Leash".  Joe switched from the Animas Ping to the Omnipod yesterday.

 



 

Originally ... six and a half years ago .... when I chose a pump, I was making that choice for a three year old.  I was making that choice for a three year old on very minuscule amounts of insulin.  I chose Animas because of the pump's ability to give basal insulin in 0.025u/hour increments.  I also recall there was some IOB issue with the Omnipod at that point, as in ... it.didn't.keep.track.of.it.  We have been happy with the Animas Ping: great customer service, minimal site loss, minuscule amounts of insulin delivery.  What I did not love about Animas was how Joe almost off-ed himself on accident, by inserting a full cartridge that was connected to his body into the pump with fully advanced piston, while he was at school...not the pump's fault at all...user error, but still scary.  We also had some "loss of prime" issues, which actually led to the previously mentioned almost off-ing himself issue.  Joe was trying to fix the pump issue at school and did not want to embarrass himself by disconnecting the tubing from the site, which was inserted in his butt cheek.  All-in-all though, we have been loyal Animas users.  Joe wants to try out life without a fanny pack strapped around his waist.  Joe wants to try a life without bulky plastic-y devices shoved in his pant pockets.  I understand.

So...here we are...here I was yesterday...pre-programming the Personal Diabetes Manager (PDM) for our pump start.

With the Omnipod, the basal increments are in 0.05 u/hour.  So, I currently have like 15 basal rates going (yes...head is hung down in shame).  There are two areas in Joe's day where his basal rates were at 0.075 u/hour and at 0.125u/hour.  I was not comfortable just cranking him up or down by 20 to 33% of his current rates.  I decided to do the back~and~forth basal thing for those increments in time (i.e. 9am - 0.15u/hour, 10am - 0.1u/hour, 11am 0.15u/hour).

Joe has never inserted a pump site on his own during his history with diabetes and pumps.  Yesterday, during his pump start, he did it.  He drew up the insulin.  He filled the POD.  He cleansed the site area.  He adhered the POD to his body.  He pressed the button on the PDM to "insert".  We hugged...yet another "first".

After the pump insertion, Joe went back to the lobby of the clinic.  There are computers out there.  The Rep and I continued to go over pump questions.  As  I was scrolling through the "temp basal" section of the Omnipod, I asked why it only went up to a 95% increase in basal.  I was explaining that I would crank Joe's basal up by 125% on the Animas Ping for road trips.  I wanted to show her what the temp basal program looked like on the Animas Ping...  I then realized that we had just sent Joe to the clinic lobby hooked to two pumps!  His Ping AND the POD!  Oy!!  I ran out and had Joe remove the Animas pump and his Tallygear belt.  He smiled and simply stated "Freedom".

Back to the temp basal...so I showed the Omnipod Rep the Animas pump's temp basal program.  She stated the POD could not go over a 95% increase.  I'll figure that out with bolusing or making a new basal program for travel days.

Now that Joe is "free", he is requesting a break from Dexcom.  He doesn't want to be tied down by carrying the receiver.  I have been quite liberal with Dexcom "breaks".  I told him that I preferred he wears it, but he doesn't have to wear/carry the receiver all the time.  He's been tied down to equipment for 70% of his life.  He is respectfully asking for a little break.  I get it.

A day-in-the-life of loosing the visible leash...the invisible leash remains, DIABETES.