Maturi-D'

Over the years, I've tried to teach him the proper way to do things.  A healthy diet was discussed and modeled.  But... he did his own thing, choosing to eat from the "Brown and Beige Club" for years - chips, bread, mac and cheese, chips, crackers.  Now, lean meats and vegetables are consumed regularly.  Blood glucose checks were encouraged multiple times daily.  This has been his routine for the most part, but with some nagging.  Rotating pump sites, took years; like 9 to be exact.

The lumps and bumps are persistent in one arm; his right.  Until this last year, he used the backs of his arms exclusively for pump sites and CGM sites.  He was reluctant to try a new area.  Reluctant should be translated as "refused".  

Several months ago, Joe first found these lumps.  I explained it was most likely due to lack of site rotation - lipohypertrophy. I encouraged rotation, but didn't say much more.  A few weeks later...

 

A little more maturity in the day-in-the-life.

Life Support Fad

 A fad or trend or craze is any form of collective behavior that develops within a culture, a generation or social group and which impulse is followed enthusiastically by a group of people for a finite period of time.

More on track ...

I don't think about it much.  They are a part of him; his CGM and his pump.  When I see him, I see Joe.  The devices are a seamless blur on the backs of his arms.  They help keep him safe; alive.

I remember when he was three.  I remember when the choice was made to start him on the pump.  It was a mere three months after his diagnosis; maybe not even that long.  I struggled with that decision.  Between the meals and the snacks, between the needles and the blood, and between the monitoring and the carb counting... he looked typical.  There was nothing "visible" about the disease.  There were no reminders that he had a chronic condition.  He looked like his peers. Adding technology, adding devices changed that.

Joe has never felt the need to hide his diabetes.  He wears his pump and CGM where people may see them.  Sure he gets questions. Usually, he responds to them.  Sometimes, if he is focused on something else, he may divert the conversation elsewhere. 

Last week, while we were at the track meet where Joe learned about kidney-pancreas transplants...

I was timing with a group of parents.  Joe came over to me, to my purse, for money.  As he walked away, a parent commented on the "new fad".

Timing Lady: "What is this new fad?"

Me:  "What?"

I followed her line of vision, she was watching Joe walk away from us.

Timing Lady:  "I've seen a lot of kids wearing those, what are they?  ... on the back of his arms?"

Me:  "OH."  I then saw what she saw.  "My son is a diabetic.  That is his insulin pump and a continuous glucometer."

Timing Lady:  "I thought it was some new kind of accessory the kids were wearing on their arms."

Nah,  just life support.

The "craze" of sporting some life support in his day-in-the-life.

Oh YAY! A First!

In all our years in dealing with diabetes, we haven't encountered this one yet.  I knew we were due.  I knew someday it would happen.

Yesterday...

"I cannot believe I have to use ... th..i...s."

Joe spoke about it like it was a dirty dish rag.  He was disgusted by it.  Between the process of manually entering in a BG and the fact that his arm was tethered to it with "little-boy" lengthed tubing, he felt it was archaic.  

To hear him talk about an Animas pump so negatively made me feel like I was listening to gossip about my BFF.  I let him know the Animas pump was the only pump I was comfortable placing him on when he was a 3 year old.  I let him know those little, ity-bity basals of 0.025units/hr gave me peace of mind.  I let him know I did not like him talking about our first pump in this manner.  

 

 

So ... as you may be gathering by now... Joe's Omnipod pump failed yesterday afternoon.  As in failed, I mean it had a PDM alarm, I reset it, and it went into some sort of death spiral; the screen transitioned from the happy blue/green/white "Omnipod" screen -> then to an all white poltergeist-y-like screen -> and then to an all black screen.  A phone call was made.  Customer support confirmed my hunch, the PDM was a goner; a new PDM would be over-nighted.

Joe was horrified over the re-setting procedure.  He could not believe the proper procedure was to stick a paper-clip (or equivalent) end into the little hole at the bottom of the battery compartment. 

"What kind of a re-set plan is that, just to poke something around in that hole?"

"I didn't make the pump Joe, I don't know."

"OK".  

Meanwhile... an hour before hockey practice, at dinner time, I've got a 300 and double-arrow-upping Joe, who is no longer hooked-up to insulin.  We had to get a back-up diabetes plan initiated ASAP. Good times.  At first he was dead set against the Animas pump (an old one I've held onto), but shots did not seem to be acceptable either.  

After weighing his options, he decided to pump. He would only place a site in his arm; the only place he uses the PODs, as well.  Unfortunately, the length of tubing was from when he was like a 3,4,5,6,7,8, and 9 year old.  So,  with his pump in a pant pocket..and the site in his arm.. his arm is kinda limited in maneuverability.  This was not even close to optimal in Joe's eyes, but it's only for one day, he conceded.

He's been disconnecting for any sort of physical activity, you know...so he can like ... ah ...  use his arm.  

I did end up at his school today.  The pump lost prime; he disconnected and proceeded to prime out the entire cartridge of insulin; Right.Before.Lunch.  There was a sub-nurse at his school.  He was not about to let her inject insulin and he's never done it.  So he held off on lunch for an hour and waited for me to arrive to get his pump situated.

"My day was going good until this issue."

"What makes it so bad now?"

"I guess nothing.  You're right Mom, this didn't ruin my day ... but it is annoying."

 

Very true.  It's annoying Joe.  

 

It's right now 7pm the following day.  I guess overnight doesn't really mean overnight.  We don't have a new PDM here.  We leave for Quebec City at 6am on Friday for a hockey tournament.  I sure hope the PDM makes it by then.

 

A day-in-the-life of missing our Omnipod.

 

 

Changing

The intake questions were directed to Joe.

Do you use Apidra in your pump?'

'Yes'

'Are you on any other medications?'

'No'

'Have you been to the hospital for diabetes since your last appointment?'

'Yes'

'Were you admitted?'

'No.'

'Have you had your flu shot'

'No, not yet.'

'When was your last dilated eye exam?'

Joe's eyes darted to me.  I answered.

A couple of days ago, we visited the Endocrinologist.  Joe's A1C was 7.1.  The usual things were discussed and assessed.  The unusual part of the visit was Joe was now an integral participant in the visit. 

More questions were directed to Joe, by the endocrinologist.

'How's the carbohydrate counting, the blood sugar checking, and the bolusing going?'

'I'm asking you these things, not because you are going to get in trouble, but because these are the things you  are in control of ...I don't want to recommend changes to your settings if you are missing boluses or if your carb counting is off.'

My mouth twitched.  I wanted to talk.  I didn't.  It's Joe's turn now.  He's 12. 

Joe responded, confirming he was good with the carb counting.  He is.  Joe responded, confirming he checks his blood sugar regularly.  He does.  Joe responded, admitting he forgets to bolus for afternoon snacks.  He has a few times over the past few months.

Overall, Joe is doing well.  The basal rates need adjusting.  Apparently I've kept him on little boy settings and need to boost them up to more "teenager-y" settings.

He's changed so much.

He's grown over 3 inches in the last several months.

His toes frequently grow out the front of his sneakers.

His face has thinned.

His legs have thickened.

His total daily insulin dose is now over 40 units; it used to be in the low teens.


As we drove away from the hospital, Joe asked if he could start to help me with adjusting his pump settings.  'I need to start being a part of that Mom... someday I'll need to do it on my own.'

A changing day-in-the-life.

A GOOD Day!

"Does he have some Gatorade that he keeps with him?" Hockey camp coach to me...this morning... in response to my informing him that Joe has type 1 diabetes.

"Ah...well yeah..."




I thought this facial expression goes well with the "Ahhh ...well yeah..." response.

Oh man, how I wish managing Joe's diabetes only entailed some Gatorade. 

Joe attended another hockey camp today.  It runs all week.  He is on the ice from 9am to 11am and then again from 1pm to 4pm.  The camp is named "Battle Camp".  Nice.

Fortunately, I learned a few things about Joe's diabetes and it's response to the intense activity of hockey camp a few weeks ago.  I learned how much to decrease his basal by, about how many free carbs he needs trickled in pre-camp and during camp.  I learned how little his insulin needs would be for lunch.

Here was my plan:

 

Yes, I realize it is blurry.  I just wanted to show you proof of how "organized" I can be. 

Here was my plan (the readable version):

CAMPER:  Joe Maher     Age:  10

Mother: Reyna Maher (802)598-XXXX  Father: Dave Maher (802) 598-XXXX

What is Type 1 Diabetes:  It is an autoimmune disease in which a person's own body (white blood cells) attack the insulin producing cells (beta cells) in the pancreas.  Due to the subsequent lack of insulin, the body's cells are unable to use sugars for fuel.

Treatment of Type 1 Diabetes:  Joe uses an insulin pump as an insulin source.

Plan for Camp: 

1. Joe must carry his diabetes bag with him everywhere during his day.  The bag contains a glucometer, SUGAR, and a phone.
2. My husband or I will come by between 10 and 10:30 to check Joe's blood sugar.
3. Joe will need to check a blood sugar and call me prior to snack time and/or lunch time (the phone is in his diabetes bag for this purpose)
4. My husband or I will come by between 2 and 2:30 to check Joe's blood sugar.

What YOU need to watch for:  If Joe becomes irritable, shaky, pale,  lethargic, or says he is "too tired" to do something he could be experiencing a LOW.

1. If you notice these signs (or anything out of the ordinary), please have Joe check his blood sugar and then have him call me.
2. If Joe will not check a blood sugar, have him eat three sugar tablets (located in his diabetes bag) and call me.

LOW BLOOD SUGAR ~ This can happen at any time to a person taking insulin.  It can be due to low carbohydrate intake, too much insulin, increased activity level, illness, and a hot or cold environment.  It is an immediate health concern.  If it is not treated with sugar the person can go unconscious, have a seizure , and/or die.

**********

 

So, here is how it went.  I fed him a 30 CHO gram breakfast and only bloused him for 15 CHO (1.5 units of insulin).  I then decreased his basal by 50% for 8 hours (the length of the camp).  During the day Joe drank a couple of G2s for "free".  I still have no idea when he chugs those.  There was not a "snack time."  He had only one time during the day to eat.  Lunch was at noon.  He received only 2.5 units of insulin to cover 120 grams of carbohydrate (CrAzY...his usual lunch ratio is a 1:18).

 

The numbers went like this, the BEST ever:

 

7:17am 127

9:15am 150

10:13am 163

12:02pm 139

2:11pm 197

4:49pm 336   I was a little bummed out about that one.  Did a half of a correction dose.  Dont' know the outcome of that yet.

 

A day-in-the-life of some hard earned euglycemia.

Patient Portuguese Pancreas Princess

There may be a little spittle on your screen if ya try to say the title out loud.  Truth, I am Portuguese (half, from my father's side).  Truth, Joe's misguided T-cells forced me into performing as an exogenous pancreas.  False, I am not patient.  And I am actually a "queen" not a "princess"...well, my name means "queen" in Spanish.

Sorry for the jibber-jabber.

This morning at 6:30ish...

"Is Joe up..."  (my less~than~subtle way of knowing he is alive)

"They are both still asleep." 

"Check Joe's number, the basal increase .. he was 127." (@ the 2am check)

Yesterday morning, I had logged Joe's numbers and noticed he had a consistent climb of about 50 points from the 2am check to the 7am check.  I think he is growing.  He is constantly eating bacon (don't ask).  I tweaked his basal from 2:30am to 6am.  I had to do the every-other-hour-thingy with the Omnipod.  I was not just gonna crank him up by 0.05 units for that length of time, because 0.05 is like 1/7 of 0.35 (what is that? like a 14% increase) ... with the Ping, I would have just cranked that bad boy up by 0.025u/hr, oh well.

Last night was my night to do the night check.  Dave and I usually rotate night checks.  He does the 2am check for two nights.  I do the 2am check for two nights...and so-on and so-forth.  We have been doing this system for a good year now.  Alternating every other night did not seem to let us fall back into the "habit" of sleeping through the night.  I have thought of a three night alternating schedule, but I fear the overwhelmingness of the the thought of three nights in a row of 2am alarms is psychologically detrimental and destructive to the checker-person. 

Anyways...

When I do the night checks, I wake-up early.  I set my alarm for 2am, but many times I wake-up at like 12:03 or 12:49 or 12:55.  And.  I just check Joe then.  And.  Yes, technically this is cheating my system that I so braggity McBragger-pantsed on my blog just a couple of days ago.

Last night...

I did it again.  I woke up at midnight.  I knew that I needed to wait til 2am.  I needed to get a good glimpse of Joe's numbers at appropriate intervals surrounding the basal changes.  So, back to bed I went til the 2am alarm.

What was he at 6:30am you may or may not be asking???  128.

A horizontal Portuguese Pancreas Princess raised her arm from her bed for a zestful celebratory pump, when Dave relayed the number.

A day~in~the~life of night time basal tweakage.

Laundry Detergent Aisle, Pet Store, Party City?

Last evening...

As the Schnauzer Party continued...with the post dinner~leash~tangling~excrement~depositing~and streaming~and~spritzling stroll around the 'hood.



I spared you the "depositing, streaming, and spritzling"

Me to Dave:  "The instant feedback from the DOC is invaluable." (most recently in reference to pumping insulin with the Omnipod)

As many of you know, we were having adhesion issues with the PODs.  The solution to date seems to be Skin Tac (Penny)  and a Band4Life (Marla...Thanks!).  Joe's PODs were falling off in the pool with Skin Tac alone.  I believe the "Band" helps keep the edges of the dressing down and prevents water seepage into and under the dressing.



Joe's Band4Life ~ The Orange Lightning (on his arm)

 

 

Onto all the other awesome Omnipod tips.  Now, I am not a doctor nor have I trialed all of these tips, but I am gobsmacked by the nuances of PODding.  Shopping in Laundry Detergent aisles, at Pet Stores, and at Party City for POD accessories has been recommended:

*....not sure if you're doing this already but I was told, when filling PODS, to leave Pod in tray and always, when filling PODS, to keep it on the right side of the PDM, with tray touching PDM.

 

* Also, (and I made a comment on your blog) PODS need to be filled to at least the 100 mark (NO LESS) or they'll fail.

 

*Hey there! Yes, I just put a sheet of bounce in the box with the pods. I read it somewhere else and figure it can't hurt. I have heard of some wiping the pod down with the bounce sheet, but I don't do that. I have sprayed her with anti static spray prior to a bounce house, but really we had NO problem at a bounce-y house and she is a crazy girl at those places. I think our static issue happened when she went down the slide and she also happened to be wearing a sweater dress that I had not washed before. (I always wash our clothes with downy fabric softener so that helps too.) I assume Joe won't be wearing any sweater dresses. (NikDuck)

 

*Ahhh, the joys of an active, podding, 10-year-old boy! I know them well! We often wrap Jack's pod with coban or "vet wrap." We buy it at PetSmart, because it's significantly cheaper there, and it's the same stuff they sell at pharmacies. Vet wrap comes in cool colors too: red, blue, black, purple. It works really well at keeping the pod adhered. Someone else told me to try spirit gum. Apparently, costumers use it to keep costume parts in place. I bought some at Party City, but haven't tried it yet. We've tried SkinTac, but it doesn't do much for Jack. The pods still fall off. The coban/vet wrap seems to do the trick, and Jack doesn't mind wearing it at all. Hope this helps! xo ~ (Heidi)

 

*In a pinch depending on how much insulin is in the pod you can suck it back out. I've done it a few times when a pod has failed right off the bat! It's against the rules of course...but I can be done! XO loves! (I'll leave this one Anon)

 

*Hang in there Reyna. We have pod "moments" too.  FYI. Apidra is only approved for 2 days in the omnipod...your script should be for a every 2 day change. Ours do fine with 3 days.  XO (Sara)

 

*About getting them to stay on in water: we had a big problem with pods falling off in salt water (not so much in pools), despite using Skin Tac before putting them on. We tried slapping on waterproof Tagaderm, but still no luck.  What finally helped was using the Skin Tac before, and then using another Skin Tac pad to soak the pod’s adhesive bandage afterwards so that it was soaked with Skin Tac and couldn’t take up water. Added strips of waterproof Tagaderm on top, and it stayed through 3 days at the beach. ~ (Kristin)

 

A day~in~the~life of gratitude for the DOC.  Thanks guys for helping Joe and I figure this PODding business out.  I am still not sure if I like it better than the Animas Ping.  Joe does though.  I guess, in the end, that is what counts.

Dog Food Arm

"Here it is...you can get it in different sizes to wrap up their paws."

"Ahhh...it is for my son ... he has diabetes ... it is to secure his pump site ... cheaper than the human stuff..."

So...I was at Pet Food Warehouse a few days ago... buying Vet Wrap (thanks Heidi) to secure Joe's POD until the Skin Tac arrives (thank you Penny) and the Band4Life ships (thank you Marla).

His arm is now covered in this green polka-dotted dressing and smells like dog food.  Not exactly what I had in mind when we switched to the POD, but I am still trying to remain positive and upbeat.  Not to mention we have gone through nine PODs and a whole vial of insulin (you lose the insulin that you put into the POD with site failures/losses)  in just under two weeks.

Site failures and losses aside, we had a successful week at hockey camp.  Originally, Joe's and my plan was to have him call me with blood sugar numbers and we would handle bolusing over the phone; he keeps a phone in Woodchuck for this purpose.  A couple of days into camp, I realized that a full day without some outside help was not a safe plan.  Hockey camp consisted of  two hours of dry-land training in the morning (soccer and field games).  Lunch was consumed at 10:30 (a huge issue for us, as his ratio at that time of day is usually a 1:60 to put the brakes on his 1:10 breakfast ratio).  After the 10:30am lunch, Joe would head out on the ice for 3.5 hours of drills and scrimmaging.  Each day I packed the same lunch.  Each day Joe would have 26 grams of Gatorade carbs (2 of the G2's) for "free"... I have no idea when he drank them.  Here is how the week went down:

Monday:  First day of camp.  I went into the locker room to meet the coach.  I explained that Joe had Type 1 Diabetes.  I asked if the coach had any experience with diabetes.  He did not.  I basically stated that if Joe started acting grumpy, lethargic, became shaky, looked dazed to have him drink a juice and call me.  I stated that Joe needed to have Woodchuck with him at all times and that Joe must be able to call me at any point during the day to discuss diabetes management. 

Joe was listening to the conversation and chimed it with a "what about the glucagon?".

"I think we will just go with a simple 911 call Joe".

I then explained to the coach that if Joe were to pass out or have a seizure to just call 911 (ya know, most likely the camp protocol anyway).

Monday's numbers and care went like this:

7:11am 230 (wake-up number).  I gave Joe 10 of his 30 breakfast carbs for "free".
8:01am 286 (camp drop-off number).  I reduced Joe's basal rate by 40% for 6 hours.
9:08am 256 (not sure why Joe checked here, he did not call me with this one).
10:21am 183 (pre-lunch number).  Joe had 20 grams of his 100 grams of lunch carbs for "free" and no correction.  The first day, he received 3.5 units of insulin for lunch.
1:07 pm 70  (Joe felt low during ice time).  He drank a juice (15 grams) and I had him eat 2 glucose tabs.
2:53pm141 (camp pick-up number).  Joe's POD had failed 1.5 hours prior and had not been delivering insulin.

Tuesday:

7:17am 98 (wake-up number).  10 of 30 grams of breakfast carbs were given for "free".
8:18am 201 (drop-off number).  Basal rate was reduced by 40% for 6 hours.
9:12 am 179 (Joe checked.  No call to me... not sure what he was feeling here).
10:24am 86 (pre-lunch number).  I just started subtracting insulin dosages at lunch time based on the previous day's data.  So we went with 3 units instead of 3.5units to cover the 100 grams of lunch.
2:47 pm 54 (pick-up number)  Welp.  My plan needed revision.  Joe did not notice his low while skating, so he did not come off the ice to do a check.  He agreed that I should come to do a routine blood sugar check during his ice time for the remaining days of camp.

Wednesday:

7:19am 77 (wake-up number).  Again with the 10 of 30 grams of breakfast carbs for "free".
8:18am 144 (drop-off number).  Again with the 40% basal reduction for 6 hours.
10:28 am 65 (pre-lunch number).  Juice (15 grams of carb) chugged by Joe and then he called me.  I had him eat his lunch without waiting for 15 minutes ... I told him to bolus 2.5 units after he ate lunch (I subtracted another 0.5 units from his previous day's lunch bolus).
10:49 am 139
12:58 pm 257 (Me checking Joe while he was on the ice).  I did nothing with this number.
2:51 pm 191 (pick-up number).

Thursday:

7:28am 137 (wake-up number).  Yep.  You guessed it.  10 of 30 grams for "free" for breakfast.
8:22am 203 (drop-off number).  Basal decreased by 40% for 6 hours.
10:34am 91 (pre-lunch number).  I stuck with the 2.5 units cuz that seemed to work on Wednesday.
11:05am 73 (Joe felt like he was "dropping").  He slurped down a juice (15 grams of carb) and then called me.  I told him to eat two glucose tabs as well.
12:51pm 150 (Me checking Joe while he was on the ice).  I gave him two glucose tabs.
2:48pm 300 (pick-up number).  Oopsie.  Should not have given the two glucose tabs.  And.  Nice.  Let's just add in another POD failure at 2:30 for some added fun.

Friday:

7:22am 117 (wake-up number).  Same...10 of 30 for "free".  Basal decreased by 50% for 6 hours.
8:26am 170 (drop-off number).  Glucose tabs x 2 given.
10:38 am 88 (pre-lunch number).  I subtracted another 0.5 units from his lunch dose.  So 2 units of insulin were given to cover 100 grams of carbohydrate consumed for lunch.  Joe's usual lunch ratio is a 1:18.  Impressive.
1:02 pm 194 (Me checking Joe while he was on the ice).  I did nothing with this number.
2:52pm 90 (pick-up number)  Booyah.  Only took me all week to figure out hockey camp.  Ugh.

I believe the consistency of food in type and amount of carb grams and the predictability of activity made this week manageable.  I've said it before and I'll say it again, Diabetes loves, loves, loves routine.  Joe did ask me on the third day if he could get lunch from the snack bar.  I told him "no".  With this amount of activity I was uncomfortable with "unknowns".  He did not grouse about it much.  He understood.  This was a huge accomplishment for us... not only numbers-wise, but in flexing some independence muscle in dealing with diabetes in a complicated situation.  It was a successful week indeed.

A day-in-the-life of managing fickle D' with my son Joe, who happens to have Type 1 Diabetes.

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.

Freak Show

"If he is unconscious or has a seizure - Glucagon is in his camo bag OR call me and I'll run over and give it..  AND call 911". ~  Yeah, so writing that part seems a little over-the-top..but what am I to do?  It could happen.  I like how I added in the part of just calling me so I could "run over" and whack him with the Glucagon.  It is so very difficult to not appear like a freak show.  To top it off I am sending Joe over with a jar of pickles and salami-wraps for "free" snacking into the evening hours.  Freak Show...

 

My Head On Village Person Body...Don't Ask...

 

10:56pm last evening, Joe's blood sugar was 25.  Haven't seen a number that low since he was 3 years old.

 

Tonight is the sleepover.  I am a little nervous, due to Joe's low trend through the night over the past week.  I cannot back out of this though.  I know it.  Joe is thrilled and I need to make this happen AND keep my composure to give the illusion of "normalcy".  So,  I analyzed his numbers this morning and backed off his basal rates. 

 

I then proceeded to type out "instructions" to accompany my 10 year old child. 

 

Here is what I came up with (I added the red just for my readers here on Beta Buddies.  No red was added to the actual document for "normalcy-appearing-purposes"):

 

Joe should check his blood sugar: every 2-3 hours and/or before he eats and/or if he feels "LOW".

 *Joe is going to call me with blood sugar numbers and carb counts and he/I will bolus over the phone.

 * I did talk to him about not "over-carbing".  I told him a couple of pieces of pizza were OK, but no more.  One carb snack in the evening would be OK, but he should not graze (unless he is running low, then it is OK).  It is OK for him to snack on the non-carb foods (the pickles and salami-wraps that I sent are for this purpose).

 LOWS - A low blood sugar for Joe is a number less than 70:  If Joe's number is less than 70 he needs sugar.  Sugar is in his camo-bag.  He needs either 3 Starbursts OR 3 Glucose Tablets.  He then needs to wait 15 minutes and then he should do a re-check of his blood sugar to make sure the number has come up to 70 or higher.

 If he is unconscious or has a seizure - Glucagon is in his camo bag OR call me and I'll run over AND call 911.

 NIGHT TIME CHECKS - Please check Joe before you go to bed and call me with the number.  Then at 2 am (sorry...ugh).  For the 2 am number, if Joe is < 70 please give him 3 Glucose Tablets (he will chew them while he sleeps) and then re-check his blood sugar in 15 minutes to make sure his number came up (double sorry).  If Joe is 70 - 100, please give him 2 Glucose Tabs.  If Joe's blood sugar is 100-249, do nothing.  If Joe's blood sugar is 250 or greater, then he needs a "correction" dose of insulin.

 Using the Glucometer/PUMP remote for "correction": (NOTE: You should be within 5 feet or so of Joe to deliver the insulin from the remote) Once the blood glucose number appears on the glucometer screen, you can select "bolus" (at bottom of screen) by using the down arrow to highlight "bolus" and then pressing the "OK" button.  The glucometer will then give you a menu of "types of boluses" , you will select "EZBG" using the arrows to highlight "EZBG" and then pushing the OK button.  The screen will then display the current BG/where we want his BG "120"/and a correction factor...the math so-to-speak.  Push "OK" (Joe's current BG will be highlighted).  The cursor will then be highlighting "show result", press the OK button.  There will then be a screen suggesting how much insulin to give (the amount will be next to the word "TOTAL=").  You will need to push the up arrow until the suggested amount is reached.  Once the amount entered is the same as what the Total suggested you will press the "OK" button.  The cursor then moves to "Go".  You will press the OK button again to deliver the insulin.

A day-in-the-life of authoring an "Instruction Manual" (of sorts) for Joe, my ten year old son who has type 1 diabetes.

The "One-Eye"

I think I was pulling the "one-eye"... you know...the middle of the night check "one-eye"?  It is where I only open one eye so that I can traverse the walk to Joe's room and sift through his d' supplies to grab a blood sugar check, while tricking myself that I am still sleeping b/c one eye is closed.  I think I was pullin' the "one-eye" at 6:07am this morning as I stumbled back into my room...from Joe's.

Dave to me:  "What are ya doin'?"

Me:  "Just checkin' to make sure Joe was still alive...he is not in his room...so he must be good."

Yes.  I am serious.  This is what I said.  This is what goes on in our d' home.

Here is what happened...here is what went down.

1:47am - I woke.  On my own.  I usually do in anticipation of the alarm.  I set my alarm for  3am,  but usually wake an hour or so prior; my internal clock so-to-speak.  The "one-eye" was employed per usual.  Joe's blood sugar was 280.  I went to bolus...I cannot remember how much the pump called for.  I think it was like 1.8 units.  I scrolled up the insulin dose, pressed OK.  Then that "dunh..nah..nuh...nah...nuh...nah...NUH" alarm went off.  You know (Animas users) that alarm that means something is up.  I looked at Joe's pump.  It said something to the effect of "there is not enough insulin left in the cartridge in this pump to give that dose you just scrolled up to".  There was 1 unit left in the cartridge.

You and I both know what I should have immediately begun to do.  You know.  Like open the other eye...traipse down the stairs...get out a new cartridge, a new set, an alcohol pad,  Site Prep,  IV 3000, and oh yea...the insulin.  You and I both know that I needed to be putting in a new site.

Now, please don't get judge-y here.  But, you wanna know what I initially did.  Yes, it is embarrassing.  It is embarrassing for a few reasons:  1) I am a nurse 2) I have been a d' rent for a pretty long time and know better and 3) this is my child and I should be taking decent care of him.

Ok...

Here goes...I stumbled, "one-eyed" back to my room and into my bed dividing 1 unit by his basal rate of 0.3 units/hr.  Hmmmm...I figured out that should get him to about 5am...with the non-corrected 280....knowing that I was hoping to sleep into 7am.  Then I actually was wondering how long it would take the ketones to climb...and finally I thought of the ICBCs (kinda going all "Princess Bride" here...you remember the ROUSs ~ Rodents Of Unusual Size).  ICBCs translates to Inevitable Cartridge Bubble Clingers.  So, technically Joe may only have about 0.5 units left in that pump.

Eyes (both of 'em) were opened.

Bed was exited.

Stairs were traipsed down.

Supplies were collected.

Site was changed.

280 was corrected.

The CARNAGE..  Note:  No Glucose Tabs were used in this scenario...They were toppled over from a previous night...left them in photo for "drama factor"



Technically, I should have set an alarm for 4-ish or 5am.  Too tired to set the alarm, I was relying on my internal clock to just kinda jostle me awake around then.  It didn't happen, hence the check for life at 6:07am.

A blood sugar was finally checked at 8am.  A 107 graced the glucometer screen.

A night-in-the-life of managing type 1 diabetes for my son Joe. 

The Dreaded "No Parent Zone"

The "No Parent Zone" sign, printed on neon green backing, increased my anxiety level a bit.

I explained (or tried to, but how on earth can anyone "get it" unless you live it) to the registration lady that Joe had Type 1 Diabetes and that I needed to talk to his instructor, give him some sugar, and have an idea where he will be on the mountain before I can remove myself from the "parent-free" zone.

Joe was on skis for the first time in his life yesterday.  Hockey is over for his team for the season, allowing time for new "adventures".  Frankly, I was nervous to take Joe skiing when he was younger.  I should have taken him, but I didn't.  His blood sugars would frequent the 20s, 30s, and 40s when he was 3, 4, and 5 years old.  I was not comfortable manning him solo on a mountain, in the cold, on skis (yes, I realize this totally doesn't sound like the Reyna and Joe that you have come to know, laugh at, and perhaps love just a bit).

Back to the sign, the registration lady, and the skiing...Joe started his day with a lesson...

The registration lady tried to usher Joe onto the back of the room to the "No Parent Zone".  I was following Joe, unwrapping Starbursts.  His pre-lesson number was 198 (it is morning, trust me...he will crash).  The lady stopped me from following Joe.

Me:  "Ahhh...I need to give him sugar"

Lady:  "Now?"

Me:  "Yep, now."

Lady:  calls over the Joe to have him come to the "Non-Parent-Free-Zone".

I gave Joe 4 Starbursts (I shoulda given him longer acting carbs, but it was all I had in my coat pocket) and sent him back into the "Parent-Free Zone."  I waited for the registration lady, who is dealing with other lesson-goers.  Once she was free, I asked if I could speak to the instructor.  The instructor was in the "No Parent Zone" and as you maybe can already tell there is no way, no how I am gonna access this "Parent-Free Zone"...and apparently the instructors don't come outta the "No Parent Zone".  So the registration lady stated that she would inform the instructor of Joe's Type 1 Diabetes, that he has sugar in his coat pocket, and that I will be located at the bottom of the hill if Joe needs me.  I watched the registration lady go tell the instructor.  I kinda waited to try to make eye contact with the instructor so that she knew what the mother (and bad-a$$ pancreas) of Joe looked like.. ya know ... in case she needed my assistance.  She never looked over.  I left feeling a bit nervous and anxious.  I was confident in Joe though.  He had sugar...he would be fine...

Off to the bottom of the bunny hill I went.  I think they really discourage this.  Oh well.  I wanted Joe to know I was there if he needed me.

45 minutes or so into the lesson, the instructor called down the mountain (hill...), "Joe's mom?"

Me:  "Yes, is he low?" (I forget he doesn't speak Diabese)

Instructor:  "Ahhh...I wanna move him up to another class.  He can already stop and turn and he belongs in the Moose or Raccoon Group, not the Chipmunks."

Me:  "Will he be going up higher on the mountain?"

Instructor:  "Yes."

OK.  So I went with it.  I checked Joe's blood sugar again (about an hour after the 190-whatever and the 16 grams of carbs).  He was 134.  I give him a couple of glucose tablets and then he is going to apparently slug back some Hot Chocolate in the "No Parent Zone".  So, I went with that too.  Just have like a smallish amount of Hot Cocoa Joe.  Yeah, right.  Who knows what he consumed in the "Parent-Free Zone".  Alls I know is that when the lesson was over and Joe was begging me to rent skis and get a lift ticket so that we can conquer the mountain together his blood sugar was 396.  I did nothing with the number.  It'd burn down.  I had more pressing issues like I was gonna have to ski.  I had not skied since 1996.  I tore my ACL (Anterior Cruciate Ligament) the last time I skied. 

Lift ticket purchased, rentals donned, I head out to get Joe off the bunny slope.  He instructed me on how to insert my boots into the bindings.  Once the skis were on, I was comforted that they felt pretty natural to me.  Off to the lift Joe and I went.  There was no line.  Once the chair passed us to scoop-up the people in front of us, I tell Joe to hurry and get up to the loading line.  I then heard him say "crap"...as, I got scooped up by the chair; Joe did not.  He had dropped a pole and was two chairs back from me on the lift.  The people behind him are yelling at him to pull his safety bar thing down.  He did.  The only comfort to me at this point is that his number was 390-something the last time we checked and that he could not possibly be low and dangling 30 feet over the earth, solo. (Now let me insert here that most parents would be worried about their kid  dangling precariously over the earth while trying to man poles and while swinging their skis a bit too wildly - in my opinion... especially when it is their kid's first time on the lift, I think the diabetes just escalates that worry and I was so very, very, very calmed by his previous high-ish number...trying to not think that perhaps his vision may have been a bit blurry with the high.)  Anyway.  He exited the chair like a pro.  Off we went to enjoy some green circle runs.  We did several of the same run...off the same lift.

Then...

We decided to mix it up a bit.  We tried a new lift.  This lift looked long.  This lift had some sort of midway exit.  As we approached the midway exit, Joe thought perhaps we should get off.  Me?  I thought what the heck?  We should scope out the top.  So, up...up...up we went.  When we exited, we had two choices to get down the mountain.  A blue square to the left or a blue square to the right.  We took the blue to the right.  It was narrow.  It was icy.  I think I maybe said some inappropriate things. 

I finally talked him into lunch.  BG was 262.  He ate.  I bolused for the majority of the carbs, but did not "correct".  Out we went, for more.

By the end of the day, Joe and I were sticking with our first lift/run combo.  Joe would mix it up a bit and go on different runs than me and we would meet at the bottom.  One time I was waiting and waiting and waiting for Joe.  Lunch bolus was on board.  It had been about an hour since he had eaten.  Nothing scares me more than losing him.  It isn't just the losing a kid thing.  It is losing the kid and people not knowing about the blood sugar business thing.  It is the lost in the woods...comatose from a low... in the cold ... kinda thing.

Welp, he was fine.  Apparently he decided to go off some sort of wooden-ramp-jump-thing and did a face plant.

A day-in-the-life of adventure with Joe.

Never Let Your Fear Decide Your Fate

60 minutes or so...ago...

Driving back across town to buy a 564xl black cartridge for our printer.  Gotta have Code of Conduct printed and signed and Medical Form printed and completed by 3:30pm today.

...for Joe's hockey tryouts.

While driving, I am on the phone "directing " Dave, who is manning Joe.

"Feed him something now.  I don't want to go into tryouts with IOB if we can avoid it."  I've said it once and I'll say it again...never, never, never underestimate the power of IOB.

You see, I am nervous.  I don't wanna let Joe down.  A low or serious high can effect Joe's well being and subsequently his performance. I want to make his blood sugars be a non-issue today, tomorrow, and Monday (his three days of tryouts).

My favorite song these days...is "Kill Your Heroes"...I love the part that goes "never let your fear decide your fate"... Gets me pumped up and rings so true.



A day-in-the-life of fretting over my pancreating abilities for my son Joe.

KinKy In The Car

5:50a.m. this morning...Dexter was donging-off for "LOW", Joe was actually 223.  I corrected and planned on changing Joe's site when he woke.  It had been in since Monday (that is a long time, I usually change him out every two to three days).  I also made a mental note to rip out Dexter.  He was dead to me. Liar.

About an hour later, still wearing his clothes from yesterday, jeans and a long sleeve tee, he was snuggled in his bed with our Miniature Schnauzers.

"How was your sleep bud?"

"Great, I am just giving these little cuties a tummie rub." His face was buried in Oscar and Henry fur.  (See, I just call him a "troll"...he is a pretty darn good kid with a kind heart)

"Look it, you cannot go to school in the same clothes your wore yesterday and last night...change and come down stairs for a new site."

He changed.  New site was done.  Dexter was ripped out.  Pre-breakfast number was 189.

He ate 54 grams worth of wheat toast smeared in butter, peanut butter, and honey.  He was bolused.

Off to school he went.

9:30-ish a.m. The School Nurse calls.  Joe was in the 400s, washed his hands...rechecked, he was 388.  I tell her about the new site and that if his pre-lunch number is over 250 to check for ketones and to call me.  The site may be bad. 

12:00-ish p.m. Yep.  You.Guessed.It.  The School Nurse was calling to let me know that Joe was 468 with moderate ketones. "OK.  I'll be right over.  He needs a site change."  I shove my partially consumed salad in the fridge.  I don't want Joe to miss out on much of his lunch-time and am dreading the "recess" plan.  He should not be running around ketotic.  This was not gonna go over well with a 400+ Joe.

As I pulled into the school, the front of the school, Joe ran out to greet me.  Apparently, we are back to doing school~site~changes in my vehicle.  He plopped in the front of the car...upper body in the drivers seat...butt up over the console-y thing...I was in the passenger side with Joe's legs.  He wanted the door shut.  Fine, I crammed myself in and shut it.  The bad site was removed.  The new site inserted without issue.  I could not find the IV 3000 that I had placed in the car for the site change.  I was trying to hurry ... I grumbled at Joe about the ridiculous position he and I were in...in the car...and could he see if the IV 3000 was under his hands in the driver's seat.  As I grumbled at him, he grumbled at me..."Diabetes is ruining my lunch and recess...." 

KINKED SITE

IV 3000 was found, under my butt.  I slapped it on Joe's butt.   (the IV 3000 keeps Joe's sites situated and allow Joe to be the ever-loving...always-moving Joe that we know and love).   Joe then got his shorts situated.  We hugged; both of us knowing and needing to convey to one another that none of this is our "fault". Diabetes was being a turd today.  Period.
 
The lunch bolus was gargantuan.  I gave 2/3 of the correction and a full carb bolus.  I have learned that bad sites followed by good sites...can drop Joe quickly...thus the 2/3 correction.

I've got the mechanics down.  The numbers, the boluses, they don't make me second guess myself often.  It is here, with the recess issue, that I struggled.  Moderate ketones...huge bolus...and recess...are not a good combination.  I knew that this was not going to go over well with Joe.  The School Nurse offered some fun hang-out-in-the-Health-Office-time with a good buddy of his choosing.

Nope.  This did not sound like a good deal to Joe.  He did not whine or complain.  He was, however, firm.

Me:  "Joe, do you think you could do recess without running?"

Joe:  "I just wanna do the bars...back flips."

Not really back flips...but going backwards around the bars...he has been learning tricks from the girls.

Me:  "OK...the bars ONLY."

Joe:  "How about swinging and the Gyro?"

Me:  "Fine. Swinging, NO Gyro." (Swinging seemed harmless...just some leg pumping...no to the Gyro because it is kind of high off the ground ~shoot...just realized the swing is high off the ground as he pendulates... back to the Gyro.... he has to hold on for dear life and it spins...it just seemed like a good idea to have denied it, as he hopefully euglycemi-tizes (a word?).

So, I am left here second guessing the activity and the ketones.  If they were HIGH, I would have said "NO" to recess.  Moderate...with known cause...I "modified" recess.  What do you guys do?

Our kinky day-in-the-life.

About The Phone...

So, his phone does not get service at the rink. Oh how I wish diabetes management was "black-and-white." It is difficult to explain the complexity of basic diabetes, let alone diabetes management on 'steroids', which is what managing this much activity is like...and add in leaving him for periods of time without a 'trained' person and no phone...well, I have been lurking more than I anticipated.

**********

The car-ride to camp yesterday was much different than the car-ride to camp on Monday.

Monday's drive sounded something like this: "Joe decrease your basal by 40% for 7 hours"... "Joe don't correct for lunch if your number is 140 to 220" ... "call me if your number is over 220 because we should just do a partial correction"... " just call me for all boluses, call me for snack times and lunch time if I am not there."

Yesterday's car ride went down like: "Joe you gotta keep moving when you are in defensive mode. You need the momentum to stop their push" .."Skate with the puck" ... "You, Joe, are an incredible skater and you know mom does not hand out compliments readily" ... "Try some shots from center ice" ... "Joe, your 'behind the net defensive move' is not a 'move'. Don't let yourself get trapped behind the net!"

Do you see the shift from Day 1 to Day 2?

From diabetes to hockey?

We are doing well.

First off, Joe loves Hockey Camp! The schedule consists of ice time from 8:30am until 11:30am. He eats lunch from 11:40 until noon. Then there is classroom time and land drills for the remainder of the day. The camp is fast paced and the activity level is up there. The diabetes management has been similar to how I ended up managing Hockey Tournaments during his past season.

Day 1:

I instructed Joe to decrease his basal by 40% while driving to the camp. I had intended to check his pump when we arrived to camp (I didn't...this is some foreshadowing).

8:30 am: Pre-ice blood sugar was 236, we did nothing

8:50 am: I was watching Joe from the warm room. He stepped off the ice and checked a number. He was 208. He did nothing.

9:10 am: Again, I watched him step off the ice. He was 150. He shot back 14grams of Nerds.

10:20 am: While the ice was being groomed, Joe came off for a snack. He was 53. He drank a juice. I then checked the basal reduction that wasn't a "reduction". Joe had accidentally set the pump to give him 40% more insulin per hour. I could have beat myself up here. I didn't. Joe and I treated the low and never looked back. Joe was really starting to feel the hunger pains from the low. He ate his F-Factor Bar (26 grams of carbs). After realizing our error and knowing he was headed back onto the ice for another hour, we did not bolus for it.

10:50 am: Blood glucose was 170.

11:40 am: As I entered the locker room Joe was programming his pump. His blood sugar was 218 and he was going to eat 88 grams of carbs. I had written a note to only bolus for 80 grams. I did not go over corrections. I told Joe to only do a carb bolus here. I did not want him to correct for the 218. I was concerned he would go low.

1:20 pm: While I was gone, Joe checked a number. He was 102. He took 2 Starbursts.

2:50 pm: Joe checked a number as we pulled out of the parking lot. He was 150.

*From 4pm until 6pm Joe was in the 300s. I find this to happen when we reduce basals and boost aggressively. I did not know how his blood sugars would respond to this particular situation. Tomorrow I will incorporate a post-camp basal increase into our "plan".

Day 2:

I decreased Joe's basal by 40% before pulling out of the driveway.

8:30am: Pre-ice blood sugar was 221 (nice)

9:30am: I am spying from the warm room. Joe steps off the ice for a routine check. 209. He does nothing (which is what I told him to do for that number).

10:20 am: I help Joe with snack. He is 150. I tell him to only bolus for 16 grams of the 26 gram F-Factor bar.

11:40 am: BG 136. Joe boluses for lunch giving himself 8 grams of carb for "free".

1:10 pm: BG was 213. He does nothing as he was going outside for drills.

2:20 pm: After the drills he checked himself. He was 99. He took 8 grams of sugar.

*Per previous experiences and Monday's post Camp highs, I decided to crank up Joe's basal by 50% for the next 3 hours. His blood sugars for the afternoon stayed in the 150s.

What I am learning: This whole letting Joe go out into the world without his Head Auxiliary Pancreas is going to be a "process". There will be mistakes. The numbers will not be perfect. Joe has "basic diabetes" and even "not-so-basic diabetes" down. I know Joe. I know that having to march from the locker rooms to a land-line in the front office to call his mom every time he boluses would take away from his first Hockey Camp experience. Admittedly, I have been lurking in the warm room. I check in with Joe three times daily. For snacks and lunch I am by his side. The "free carbs" with his snacks and lunch depend on where his number is. Also, I want him to not correct for blood sugars that range from 140 to 220, but I want the "negative" correction for blood sugars less than 120, and I wanna only partially correct for blood sugars greater than 220. Yes, I have issues.

We are doing this. Joe is doing this.

A day-in-the-life of trying to be a 'Remote Support Pancreas'. It is a tough job, but it must be done to allow my son to grow.

"Rodent-like" MacGyver-ing

Sometimes, in this life, I feel the rules don't apply to me. Like the Rule of 15's... sometimes I tweak that a bit. Or, like a month ago ... when I was going 32mph in a 25mph zone and I got pulled over by the Fuzz, I immediately asked the officer for a reason as to why I was being detained. He gave me a little guff and then let me know. I was internally eye-rolling my Lancome fringed eyeballs and internally muttering a "For goodness Sake isn't there like a 10mph grace-speed with the whole speeding thing?".
Well...

Yesterday...

I found out why, the hard way, you are supposed to use that little plug-cap that is enclosed with the box of Animas Insets. Now, don't get me wrong. I did, at one time, use them. I used them for every bath. I "plugged Joe off" for every dip in the pool or the lake. I did...years ago. Truly, I did.

When you are dealing with diabetes and the non-stop routine and management you start to cut corners a bit. Or... *ahemm*... at least I do. I count carbs down to the gram, I pop sites into Joe as sterile-y as possible, I mother bird like a pro... but apparently I cannot be bothered with this cap-thingy. Frankly, I haven't used it in years. We have never had an issue due to my plugging exclusion. No infections. No clogs. No anything. It was a corner I was fine with cutting in the grand scheme of things.

So...

Back to the story...

We are vacationing. We are visiting Cape Cod.

Yesterday was the first time Bridget and Joe have ever played on an ocean beach. There was digging. There was castle making. There was crab saving. There was a pump~site~clogged~with~beach~sand. And. Once again, managing Type 1 in Joe's life provided us with adventure and the ability to effortless-ly entertain any on-lookers ... and trust me...there were a few.

Here is how it went down:

Joe emerged from making "low~tide~crab~sanctuaries" for a blood sugar check. 5~4~3~2~1. A 156 was obtained. He wanted to munch on a few potato chips. Fine. I am not a carb~tight~wad, as many of you know. I figured I would let him have a few chips for "free", but would plug him in and crank in a couple of hours of basal before he went back to wave-jumping and crab-saving. I go to plug in the pump tubing to his site. I line it up and start to insert it...it falls short of the "click". I flip it around...try to cram it in again...no "click".

The Removed Site (note the tan color in the set)

The pump insertion site was filled with sand. Joe calls for a site change and exposed his cheek. Dave was my assistant. I needed one. Slapping in a site in the middle of a wind-swept, sandy beach requires some mad pancreating skillz. IV 3000s were blowing in the breeze...IV Prep was precariously placed on a towel ... We used the old cartridge. It still held about 36 units of insulin. And, we used the old tubing too to avoid the whole unloading, re-loading, and priming steps that the pump would require.

Once the site was in and 2 hours of basal were given, I looked in Woodchuck #2 to see if we had a plug. I did have a plug, but it was for the Contact-Detach system. It didn't fit the Inset. Dave then MacGyvered the system by using the connector off of the new set. He went all "rodent~like" and chewed off the tubing. We then plugged the new site with the connector and covered the whole set~up with the IV 3000.

The Chewed-Off Tubing MacGyvered Plug

It worked like a charm.

A day-in-the-life of realizing the rules are there for a reason... sometimes.