Uh...Yeah...

In the hot tub, last night...

Dave and I were talking about Joe's Dexcom.  We are currently waiting for a new receiver, as our last one has lost it's volume.  It seems it is plenty loud to alert for a high, but is barely buzzing for a low.  When our Dexcom has adequate volume, Dave and I will take turns manning it at night.  When I man the CGM, it alarms ... I eventually wake up ... I deal with the alarmed for issue.  When Dave mans the CGM, it alarms ... I eventually wake up ... I kick Dave ... he wakes up ... and deals with the issue.

Again..back to last night...

We were talking about Dexcom-low-volume problem.

Dave:  "It's too bad it doesn't have a different tone for a high and a low."  My eyes kinda go all bug eyed and I then kind of give him the side-eye.

Me:  "Uh...it does."

Dave:  "It does?" in a surprised voice.  Meanwhile, imaginary fiery hot pokers being ever so slowly jabbed into my eye balls.

Me:  "It has for the whole 7 years he's been wearing it.  Seriously?"

Me:  "In fact, there are three different alarms: a high, a low, and a really low (below 55) alarm."

What I'm dealing with in managing the day-in-the-life.

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.

D' Diligence

This just in...

By the way, I am grumpy...have a cold...

Car ride home from school, about 10 minutes ago. 

Me to Joe:  "You ordered the school lunch for the field trip tomorrow. Right?"  (We filled out forms for the all day hike a couple of weeks ago.  My mind is already carb-counting-out his lunch and trying to settle on some sort of basal reduction plan that may or may not work depending on the Universe's alignment and 'tude tomorrow...oh, and Joe's growth hormones, exertion level...hikes have notoriously left me a wreck in the past.  My worry of losing Joe in the woods connected to lethal amounts of insulin dripping into his body is a hard habit to shake.  He hikes fast.  I am usually clambering up or down some mountain paces behind him...yelling for him to slow down...it has been like this for years... yes, it is a little embarrassing)

DUH-faced Joe: "Mom!  You did not tell me to hand in the forms."

*internally going all kinds of ballistic*

Let me tell you the system.  The school sends home a folder.  Every.Friday.  The folder has two sides.  One side is labeled "home" and one side is labeled "school".  So the forms to view and complete are in the "home" side of the folder.  I view them.  I complete them.  I then put them in the "school" side of the folder.  The folder then makes it's way to school via Joe's backpack.  Now, I don't know how the folder traverses the school from this point on, but I am assuming that some-how, some-way those forms get to where they need to get. Hopefully the issue here is that Joe forgot about those particular forms on that particular week a couple of weeks ago.  Hopefully he is all set to go...for tomorrow.  Hopefully, I am frustrated for no reason.

Me:  "Joe the forms were in the folder." (firm, no-nonsense voice)

Joe:  "Ahhh .... what folder?" (mind you, there is only this one folder in Joe's life right now)

Me:  "Joe, this is your job.  I put the papers in your folder two weeks ago.  It had your permission form.  It had your menu choices.  It let them know that I am riding the bus and going on the field trip with you.  I am gonna blow a gasket on ya."

"And ...did you turn in your book order?"

*his blank expression spoke for him...he forgot to turn that in today*

"Fine.  If you don't hand in the book order, you don't get the books.  That is a logical consequence."  Using tactical parenting lingo while actually parenting is most likely not smart.  I am giving him an unfair advantage.

We pulled into the driveway.  I had, finally, calmed.

Bridget, Joe and I settle into the kitchen.  I look over Joe's daily diabetes log. We are still struggling with managing a large drop from pre-recess to post-recess.  At this point, I hesitate before looking at the numbers...depressing.

Joe notices me looking at his numbers.

Joe:  " I was double-downing before recess..." (he was 108 while Dexter showed the rapid drop)

Joe continued on:  "I didn't go for an Oreo~boost.  I needed fast-acting sugar for that number ... with the double-down and all.  I went for Skittles".

Joe's day-in-the-life of being a normal, forgetful nine year old boy while showing D' diligence.

The In-Between Place

11:58pm last night...on the heels of the news of another child lost, at the age of 13, to Type 1 Diabetes...

I hear it.  Is it part of my dream?  As I lay there in some sort of state between wake and sleep, I try to figure it out.  The sound.  What is it?  Then it stops.  My mind rests.  I slip back into sleep.

It starts again.  I hear it.  My body and mind struggle with the sound; having a difficult time placing it.

Some nights it seems that Joe's Dexcom can alarm for a good hour before I wake enough to identify it.  There are hours of my nights that are spent in that "middle" place...not awake...not sleeping...in a cloudy haze.  Too tired to wake.  Too awake to sleep.  If that makes any sense what-so-ever.

Finally, I placed the sound.  Shit.  It is Dexter.

"LOW" is on the screen.  The "Under 55 Low" alarm.

I kinda lay beside Joe, as I ready the glucometer...eyes half-focused...so tired...cannot really tell if he is breathing...he is not really moving...or responding to my touch as I handle his finger for lancing.  Good.  The blood comes quick after the poke.  A sign of life. 

The blood is wicked up the test strip.  The glucometer counts down 5~4~3~2~1.  A 105 graces the screen.

I shutdown Dexter.  His accuracy has been off with this sensor.

I leave my 3:00am alarm set.  The 105 bears watching.

A day-in-the-life of my nights watching over Joe. 

"Same-Same" At 70mph...

I think this was the first wedding ceremony that I actually enjoyed a beverage, an alcoholic one at that, while spectating.  Tara and I clinked bottles, as we waited for Chloe, Bridget, and Joe to escort Mom down the aisle.  My mom got married at my sister's lake house this weekend.  Congrats Mom!

Yesterday....

As we were driving home from Connecticut...where the ceremony took place....

I was zoning out in the front passenger seat, as Dave drove.  Then I saw it.  A Connecticut license plate had the letters "D" "I" "B" "E" "T" "E" "S".  No, that could not be.  I wondered if the "DIBETES" was short for "DIABETES".  My answer quickly flashed by before I had time to verbalize all that had been going down on my side of the car with the license plate and my curiosity.  My answer was in the form of an arm site...a CGM?.  I caught a glimpse of it as Dave whizzed by the young adult female.

"Dave!!!  I gotta get by that car again." I think I was kinda excited.

"She has a license plate that says D-I-B-E-T-E-S...and she has diabetes!!!"

"She has an arm site of sorts."

" I think it was a Dexcom."

I desperately wanted to share some sort of "uniting" moment with this woman.  So, I talked Dave into slowing up and positioning the car so that I may "interact" with her on some level while we careen down the highway.  My idea was to wave some sort of diabetes paraphernalia out the window.  Bridget was horrified.  Joe did not even know what was going down as he was head-phoned and engrossed in The Princess Bride.

Dave maneuvered us in and out of traffic.  He slowed.  He weaved.  He got us over to the right lane.  She, "DIBETES License Plate Lady", was in the middle lane.  She passed us.  Dave then crossed the middle lane and got us into position in the left lane.  He stepped on it.  I rolled down my window.  I had Joe's Dexcom receiver in my hand.  I was waving it out the window ... kinda fist pumping it in the air ... at "DIBETES License Plate Lady".  I think I was screaming "WOHOOOOOOOOOO!!!" or something.  She and the passenger, another young adult female, took notice of me and responded in like with multiple fist pumps, while "Wohoooooooo-ing".  Huge grins were gracing our faces.

Upon closer inspection, her arm site was a pump site.  It looked "Medtronic-y".

A day-in-the-life of wanting to express "same-same" at 70 mph.

In"D"pendence

Essentially I send my kid out into the world daily hooked up to a hormone that can kill him. Yep. It is true. I don't think many people "get" that. Managing type 1 diabetes is tenuous. Balancing activity, carbohydrates, and the hormone insulin is the nuts and bolts of the matter. It is difficult at best. The balance of blood sugar numbers is not easily achieved in an active, growing child. Perhaps just as challenging is balancing "safety" while my type 1 child, Joe matures.

It was a first, the above text. Joe sent it to me from my mother-in-law's phone. She was watching him while I ran out to the store.

Times are changing.

This year the calls from school are from him, not from the School Nurse.

Each and every call to my cell phone is initiated with a whispery-question-y, subdued Joe voice "Ah... ... mom?" (who does he think is gonna answer?) "I am 72, double down ... should I do a combo bolus heading into lunch?" "I am 45, I was 42 before that ... I think we should turn down the basal..." "MOM!!!" (frustrated) "you don't understand... it is a Substitute Nurse ... she cannot help me with the Beef Taco carb count!"

Times are changing.

He asks to run across the street to play with friends. <*GASP*> Inside their homes even. He checks his blood sugar first. He lets me know where he is at "number-wise". He takes sugar according to his IOB and Dexter arrows. He consults with me, sure. I usually respond to any questions with "what do you think you should do Joe?" Many times he is spot-on. He is excellent at considering possible activity. He is getting better at recognizing the impact of IOB. Once in awhile, I will mention a combo bolus or a temp basal as a suggested action as well. He knows the implications of a bad lows and will boost, boost, boost to avoid them. He does not seem too concerned about highs and does not report them to me. He thinks he is "good-to-go" with numbers in the 200's, even in the 300's, and will head across the street care-free without a word to me.

As he becomes more independent, I notice that we tend to run him a bit higher; we run him a bit higher for "safety-sake". Times are changing. And. With the changing of times, Joe's last A1C bumped up a bit. And. With the changing of times, there are more people involved in Joe's management ... namely, Joe. As with everything else that requires balancing in diabetes care, the carbs, the activity, the insulin; the transference of care, the evolving independence demands balance and careful attention too. During Joe's last Endocrinology appointment, his doctor cautioned me about Joe's independence level with his diabetes care. A "let the reins out gradually ... and ever so slowly" approach was encouraged. Makes sense. Wish me luck.

A day-in-the-life of raising a child with type 1 diabetes.

The One In Which My Hair Accessories Save Joe???

We had a first tonight. It was a bit scary. Nothing that a firm, thicker than average bobby-pin adorned with a glittery red star couldn't take care of.

Joe had a busy week. His week entailed all the usual end-of-the-school-year festivities. Baseball for 2 hours each evening on Monday, Tuesday, and Wednesday. A field trip in 90 degree weather with a 3 mile hike on Wednesday. Thursday was Field Day followed by the school Bar-B-Q. Today was the "Closing Day" of baseball.

Joe is grumpy.

Joe refused to eat dinner tonight ... not out of spite, he was just 'not hungry'.

Fine. I decided to basal assess the little troll. He has been running high after dinner for the past few nights and I would love to see what is going on with his underlying rates.

I let him know that we would not be assembling any sort of meal for him at a later point in the evening. He understood.

About an hour later...

Joe was asking for food. Dave and I stood our ground and refused. I don't know if it comes through on Beta Buddies, but Joe is a strong-willed being. I admire this quality. It will serve him well. However, at times, it can be a difficult quality to cultivate and nurture...and tolerate...and deal with... and live with...and co-habitate with.

So...

Joe, angrily and somewhat stomp-ily, headed up to his room. I went to the super-market for some wine and cosmetic products. Dave and Bridget were reading. I was gone for about 45 minutes.

Upon my return I checked in with Bridget. She said something about "Joe's door being locked... been trying to get in....blah...blah...blah" (she has a 'talking issue').

*shoot-stix*

His last number was 80 about an hour or so ago.

I went to his door and attempted to turn the knob. Nothing. It was locked. I knocked, loudly.

No response.

I pounded and yelled a bit ... "Joe!!! Let me in!"

No response.

I called down the stairs for Dave. I needed some "back-up".

Then, I started in with the threats, "Joe Maher if you do not open this door right now there is no TV, no DS, no roller blading, no nothing, I will take away E.V.E.R.Y.T.H.I.N.G in this world that makes your life pleasurable!!!!"

No response.

Nothing.

Dave was then pounding on Joe's door, while I ran to grab my zebra-print bobby pin. I unbent it and straightened it a bit... I ruined it (one of my favorites). I tried slipping it into the key hole. It was too flimsy. Nothing happened. The door remained locked. My thoughts fleet to Joe's window. It is too high for us to reach exteriorly. Out of desperation and the need to 'do something' I pounded on Joe's door. Dave ran into our room and banged on the wall that separates Joe's room from my closet. Our efforts were loud.

No response.

Bridget was watching and asked (no, not even I ... can make this "stuff" up) "where is the cowbell?" I let her know that "this is no time for cowbell".

Dave ran down stairs. For what? I do not know. (a screwdriver, he now tells me)

I ran to my bathroom for my red~glitter~star~bobby~pin. It was firmer than my zebra one. It worked.

The sight when I entered was a sleeping Joe ... sweaty ... drooly ... sleeps~like~the~dead~Joe. It took a couple of minutes to shake and wake him. Dexter read 200 (double up). Real-time BG was 188. Wonderful, I found out why we are having so many post-dinner highs. I crank up his basal by 50% for 2 hours. I went ahead and increased his basal rate from 5pm to 7pm from 0.175units/hour to 0.2units/hour.

Joe was already back to sleep.

Dave, Bridget, and I were somewhat stunned over the antics that occurred during the previous 4 to 5 minute window of time.

A day-in-the-life of caring for someone you love who happens to have Type 1 Diabetes.

"Marks", "Squirts", JUVIE, and PODs...

So, this post-concussive thing isn't working out too good around here.

I am finding Joe even more "work" as I am trying to keep him from tripping, careening, falling, or flying to the ground to smash his already damaged melon into the asphalt, dirt, wood chips... pick your poison... it is all dangerous to a concussed cranium.

As his body has slowed, interesting things have been discussed and divulged as his thoughts have time to stew. The discussions are particularly titillating on "Oscar's Business Walks".

During the "Business Strolls"...

Joe counts how many times he "marks", "squirts" (what is the difference?), and "pees", and well you know ... does the "big business". As we walk Joe continues to keep track and reports with each "mark", "squirt", and "real-business" the updated tally. I just "uhm" and "ahhh", not really listening, just waiting for the mother load of business so that we can head back home.

On our walk last night....

"So, am I to young to go to Juvie?", Joe sprang on me after a "mark, squirt...etc...tally update".

"What?" (dear God, seriously?)

"You know Juvvvie ... " (I guess the extra emphasis on the "v's" was employed to jostle my knowledge base) Joe then waits patiently for my response while he lets Oscar tangle himself on 30 feet of retractable leash.

"Ah, yeah ... too young"... I was not gonna go 'there' ... and I certainly don't wanna know why in the hell he is asking.

This morning, on another Oscar "Business" walk ...

Joe was talking about his tubing from his pump. Apparently it was giving him a "feel" in the "nether regions". I have never heard him complain about his tubing. It is all he has known since he was three years of age. So, I asked ... thinking he would answer "no"... I asked if his tubing bothered him. A simple "sometimes" was expressed in the soft-lisp-kissed-nasally voice.

Hmmm.

"Yah know, there is a pump that doesn't have tubing." I then asked, "Would you want to try that sometime?"

"Sounds nice mom ... I think so ... maybe."

Wow... Not sure how I feel about this...

Pre-Ping, I wielded the Animas Insulin Pump like a pro while keeping up with an "On-The-Go-Joe". I could check the time, IOB (Insulin On Board), and bolus while Joe ran, slid, scootered... and ice skated. Not once was a site dislodged due to my pancreating feats and prowess.

The following depicts some of my adventures with a 3 year old, a 4 year old, and a 5 year old Joe (pre-Ping) ...

Time check on the slide...

Scootering down the street during a correction bolus...

The "traffic-cone-appendage-skateboard" incident....

Running down the street during an IOB check ... I didn't dislodge his site even though the tubing was as tight as my Jordache Jeans were in High School.

The seriousness of this conversation has not been determined. I am willing to look into it for Joe if he is, indeed, curious about the pod. I have heard that they get "knocked off" easily during high intensity sports like basketball. Is this true? And, I have also heard there is/was an IOB issue. Laura ... Lorraine ... Penny... anyone? I guess I am willing to think about it. Also, does anyone know if Dexcom is as close to coupling with Omnipod as they are with Animas? Another concern of mine for sure.

A day-in-the-life of wanting to lose the "leash".