He Should Do That, He Can Eat That, And His Diabetes May Vary

Daily, I am reminded we each, each and everyone of us, have our "thing".  I believe most of us want others to understand, or attempt to understand, our "thing".  

I want more understanding and acceptance for Joe and all persons with t1d.  The daily care, attention, and psycho-social-emotional toll the disease demands can be overwhelming.  To an outsider we can look like we are micromanaging things and making a bigger deal out of things than there needs to be.  Many people do not realize the attention to detail that must occur, in order for things to run smoothly and safely for Joe throughout his days...and his nights.  Misinformation and misunderstanding and subsequently the judgment of persons dealing with this high maintenance chronic condition can be frustrating.  

The following conversation took place a few weeks ago.

"Hi, is this Joe's mother?"

An apprehensive "yes", was answered.

"This is Mrs. (blank), his (blank) teacher."  

*Silence.  He's never liked the subject matter this teacher teaches.  I entered the conversation with trepidation.

"I wanted to learn more about his type 1 diabetes."

"Ohhkay.  What would you like to know about?"

"Well, it seems like he is doing a lot of 'stuff' for his diabetes during my class."

Joe had just experienced a couple of weeks of low-ish numbers.  So, this did not surprise me.

"What time of day is he in your class?"

"At the end of the day."

"Oh well that makes sense.  He has been running a bit low and he most likely is looking at his number and taking sugar.  After school he either walks a couple of miles home or he has hockey practice.  He typically would need to eat a snack for hockey and he might take some sugar tablets prior to walking home... what have you seen him doing?"

"Yes..he is taking some tablets and I have seen him eat.  ..... I also overheard him...and I didn't want to call him out in front of his friends...but he was telling his friends how he drank a chocolate milk, some orange juice, and he ate some Cheerios.  I know that probably isn't good for his diabetes and thought you should maybe know."

*This is where I take a deep breath and remind myself that I am thankful this teacher called me and wanted to learn more*

"It's totally fine if he eats those things.  He would need to give himself insulin for them to cover the carbohydrates.  Sometimes, he uses those foods to boost up his blood glucose or to treat a low."

"Well, it's just..that....  I have some friends who have diabetes....  It seems like Joe is doing more work ...with his diabetes... than they do."

*This is where I again, take a deep breath and remind myself of my gratefulness for her phone call*

"I think your friends  may be a little bit older than Joe (like by 50 years) and they may not have the same type of diabetes, and they are most likely not as active, and they may not be trying to keep their blood sugar in the range that Joe is trying to keep his in.  Each person's diabetes can vary quite a bit."


Teaching teacher about our day-in-the-life.

Conscientious

Yes, he is 12.  Yet, it's already on his mind; driving and diabetes.  In particular, lows and driving and the impact of those two potentially dangerous things occurring simultaneously.

"If it's a long road trip... like a few hours, I think I'll stop and check every hour... does that sound good?"

"Yeah, Bud, that sounds like a good plan."

"I would never want to hurt someone."

"I know."

"You take good care of diabetes.  When it's time, we will ask your doctor about it.  I know you will be responsible."

"Would I go to jail?"

"For what?"

"If I caused an accident."

"Because of a low?"

"Yea."

"I don't think so ..  I really don't know."

"Hurting or killing someone else ... " His conversation trailed off.  He shook his head and looked out the car window.

All of these years have been spent caring for him and worrying for his well being, his safety, his psycho-social-emotional health in dealing with a somewhat micro-managed day-in-the-life.  Am I teaching him well?  Will he eventually get the hang of it all?  Will he make safe decisions?  The driving and the college years have started to seep into my thoughts.  I suppose it should not surprise me he has some concern over his increasing independence and the responsibilities that accompany it. 

Realizing how his day-in-the-life could harm others.

ADA Drivers License Laws By State

Fair Flu Shot

She slouched down in the passenger seat; her messy top knot bun was getting scrunched  up.

A few days ago during our car ride to the pediatricians office, mentions of flu mist and flu shots peppered the conversation.  Bridget was listening in earnest as Joe talked about live and dead viruses.  The dead ones being what he needed, due to his diabetes.  Unfortunately the dead ones were in the flu shot and not the mist.  Bridget could opt for the flu mist, since she does not have a chronic condition.  Bridget sighed and then slouched down a bit further.  Bun getting scrunched up even more.

Silence took over the moment

Quiet filled the space.

Then Bridget confidently stated "I'll do the shot too...  ... to be fair .. to Joe."

A simple, softly spoken "thanks Bridge" came from the back seat; from Joe.

For the remainder of the car ride, discussions of past vaccine and shot experiences ensued.

They were both nervous, anxious, and worked-up.  

We arrived to the parking lot.  As we exited the car, a hearty and quite unexpected ... "don't BlarT yourself Bridge!" was called out by Joe.  From what I could gather the verb in that statement is two simultaneous expulsions (or explosions; take your pick) from opposite ends of your body.  They were both concerned this may happen to them upon inoculation.

Lovely.  I'm so proud.

Joe and Bridget were hand-in-hand as we maneuvered through the parking lot.

"We are in this together" cried Bridge.

Flu Shot Selfie

Being fair in our day-in-the-life.

Not So Easy

Diabetes care is non-negotiable.  Joe knows it.

If Joe doesn't do his diabetes jobs, checking blood sugars and bolusing, there is a consequence.  It is the loss of his phone for the following 24 hours.  Some people think this is harsh; like he is being punished for having a disease.  Think of it this way, he is a 12 year old with an iphone.  It's not a big deal.  Not taking care of diabetes is a big deal.  It can alter his morbidity and mortality.  

A few nights ago, his head was hidden by his sweatshirt hood.  His face was buried into the couch.  An arm draped over a dog; Oscar or Henry, I cannot remember which one.  

Henry - black/Oscar - salt and pepper

 He didn’t bolus for an after dinner snack.  The bolusing is where we are struggling a bit. I was questioning him on it. 

“Why?”

No response.

Head remains buried.  

“Why don’t you bolus Joe?”

No answer.

Head buried.

Stroking dog.

“Please answer Joe.  Is it that you forget?  Does it take too much time?”

Silence.

“I’m trying to help us figure this out.”

Joe peeked up from the couch cushions, head still veiled by the hood.  “I don’t know mom.”

“You don’t know?”

“Mom, I just don’t know.”  His eyes shone with tears.

I let it go… for now.

A not so easy day-in-the-life of being a preteen with type 1 diabetes. 

The Smiley Face Did The Trick

Joe finds them annoying; the questions.  The questions a head pancreas, who is supervising a pancreas in training, ask. It was much easier when I did all of the diabetes care. 

  

“Did you check?”   “Did you wash your hands?”

“What is your number?”  “What was your number?”  “Joe, check your number?”

“What is Dexter saying?”  “What was Dexter saying?”

“Have you bolused?”  “Did you bolus?”  “Joe, bolus.”

“Did you eat sugar?”  “Eat sugar.”

“Do you have your supplies?”  “Don’t forget your supplies.”  “Go get your supplies.”

“What did you eat” “What are you going to eat?”  “You gonna eat all of that?”  “How many grams?”

“Change your site?”  “Did you change your site?”  

This is a pretty accurate blow-by-blow of our days.  Mind you, the questions aren’t asked one at a time.  They pretty much get peppered out the way I wrote them.  We ask one; no answer.  So we ask again … and … at times, a third question or follow-up statement is required.  Parenting a preteen, a preteen male, a preteen male with type 1 diabetes, can be maddening. 

Even via text… 

I think the emoji prevented me from needing to ask a third time.

A day-in-the-life of a transitioning pancreas.

Night.Strip.Trash

There was a time that I was a neat night pancreas...



See how the used test strips are/were housed in a dish?

 

**********

"Oh...yea...If ya get some sort of error message when checking Joe ... just grab another strip and re-test....and if that one errors-out...just grab another strip...and so-on...til you get a number." ~ Me to Dave

You see...

A few nights ago...and btw, I am surprised this hasn't happened to me before during my 7 years as an exogenous pancreas.

During the 2am check, while trying to coax out a strip from a fresh (fresh - meaning full and hard to manipulate out a strip) freestyle vial~vesicle~container~thingy, I dumped out all 47 or so strips onto Joe's chest of drawers.  Unfortunately, they spewed out all willy-nilly-like all over the place and there were some old used test strips spritzled into the mix.  I'm a slob night time pancreas, so it seems.

So, our test strip vial now has "old-dirtys" mixed in with "new-cleans".  Nice.

 

 

A day~in~the~life of needing to clean up my night-time act.  I'm sure you are better about throwing away your used night strips.

Even While Running A 1/2 Marathon

I checked his blood sugar, fed him, and bolused him.  I then set the stove clock to alarm in two hours to remind him to do a blood sugar check.  He was to call me with the resulting number...


The Marimba (iPhone default ringtone) started-in around mile 9.

As I picked-up the phone, the runner next to Dave and I said 'ah helllllo  .... you are a little busy right now?'  The call was from Joe.  It was during a half marathon that Dave and I ran a couple of days ago.

Me...cutting to the chase:  "What's your number?"

Joe: "What?" (Bo-jangles...why did he think I had him call me after his blood sugar check?)

Me:  "What is your NUMBER?"

Joe:  "Oh...199"

Me:  "Are you going to eat?"

Joe:  "No."

Me:  "K.  Eat two glucose tabs."  (the 199 would bottom out without sugar)

Me:  "Love you baby."

Joe was 132 when we arrived home about an hour later.

A day-in-the-life of running a half marathon and satellite pancreating.

Limitations...

As much as Joe likes being free of the "leash", he has, at times, verbalized the pros of the Ping and the cons of the POD.  He continues to state that he prefers the POD.  However, his frustrations with the switch to the Omnipod have not gone unnoticed by me.  In particular the adhesion issues, the POD failures, and thus subsequently the added site changes.

My Dear Joe.. He rarely complains about the diabetes aspect of his life.  I'm not sure if he thought the POD would make it more like he did not have diabetes.  Granted it looks like "less" of a big deal than the tubing-ed pumps to an outsider, but "it", the POD, doesn't really take away the day~in~the~life of managing diabetes.  I think Joe is starting to recognize that.  It is difficult to watch.

A couple of evenings ago...after dinner time...

"I don't want to do a site change now ... can't you just do it at 4am?" Tears were pooling in his medial canthi.  I could hear the emotion in his voice. (Btw this is very, very, very uncharacteristic of Joe when it comes to site changes)

The POD would be expiring at 4am.  Apparently, Joe wanted me to just pop-up and change it at 4am.  He wanted to procrastinate on the POD change.  He was as close to begging, as one could be...without actually begging.

I held firm.

I explained that waiting 'til 4am wasn't a sound plan.

He rallied a bit.  We changed the POD.  He winced with the insertion.  Tears slid down his cheeks in pain? frustration?  defeat?  I'm not sure which emotion the tears originated from.

Then Joe reached for me, for an embrace.  He was silent as we hugged.

"I think Joe...I think what you are finding out...what we are figuring out...is that there is no perfect pump for managing diabetes.  No matter what pump you use, you still have the diabetes and all that comes with it...the site changes...you still have accessories in the form of bands or pump packs...you still have to check blood sugars ... count carbs ... bolus...you still experience the highs and the lows.  The technology doesn't take away the disease.  It's still there."

Joe nodded, his head still nestled into my neck.

A day~in~the~life of recognizing the limitations of technology.  It is not a CURE.

One Third (It's a BIG "Hunk")

In response to "Overkill or Good Diabetes Parenting?"

Store hours?  I wish.

I wish that diabetes management had like store hours or something.  Like maybe Joe's beta cells could "magically" come back to life from 9pm to like 8am.  Ya know?  Like every night Joe's glucometer and insulin pump and CGM could put up a "CLOSED" sign.

Yea...right...

What is 8/24?

I believe it is one third.

I believe it is one third of our 24 hour day.

If it is one third of our day~in~the~life of living with diabetes, guess what?  It is one third of our A1C.  I guess I shouldn't say "our"...it is one third of my child's A1C.  One third is a big hunk of my child's well being.

I am not going to be wishy-washy here.  I am not going to say do what works for you and your family.  I am not going to.   I am going to say that I think night checks are part of managing diabetes.  I don't do night checks solely out of fear of lows and out of fear of the dreadfully named "Dead In Bed Syndrome".  I also do them for trending blood sugars and adjusting basals accordingly.  And.  I do them for correcting highs as well.

It is a third of one's A1C  during a chunk of time that would normally have "predictable activity" (sleeping), with "predictable carbohydrate intake" (not eating, because sleeping), and with, for the most part, a "predictable amount of insulin" (no carb intake, because not eating, because sleeping) on board.

Our nightly routine here is:

Dave checks Joe's blood sugar @ 11pm (the following assumes no IOB and no CGM):

• If Joe's blood sugar is less than 70, we treat by using the rule of 15s.
• If Joe's blood sugar is 71-100, we give 8 grams of CHO
• If Joe's blood sugar is 100-250, we do nothing.
• If Joe's blood sugar is greater than 250, we correct and then set an alarm to check Joe's blood sugar in 2 hours.

Dave or I checks Joe's blood sugar between 2am and 3am:  We use the same actions as written above.

A day~in~the~life of managing my son, Joe's, blood sugar at night.

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.

"Good"?

My vision was tunneling, the periphery clouding.  I had to hunch myself over a bit in an effort to avoid passing out.  I was hoping the lady would stop talking and move on.  The lady was an acquaintance-y friend of mine.  She is the mother of one of Joe's school-mates.  I had not talked to her in a couple of years.

I had just popped off a 5 mile run without hydration.  The humidity and heat were elevated.  It was on July 4th.  I ran into this acquaintance-y friend of mine on the sidewalk about a mile from my home.  About a mile from hydration!

"How's Joe?"

"He's doing well."

"How's his diabetes?"

How to answer?  How to answer?  It's good?  I mean really?  Is it ever good?  Sure.  I can smile and pretend it is all well and fine and that Joe and I just luuuuvvvvvvvv checking blood sugars, counting carbohydrates, and changing pump sites and staving off lows, while avoiding the long-term complications of highs.  The easy answer... the easy answer is just like the response we all give when someone asks how we are doing in passing.  The easy answer is "good". 

Still feeling a bit passing-out-ish...

She (Joe's~school-mate's~mother) then went onto tell me about a childhood friend of hers. She had a childhood friend.  She had Type 1 Diabetes.  She did fine through childhood...grew-up...went to college.  She came home from college for a school break (Christmas Break?  I cannot remember)...she took a nap... she never woke-up...her mother found her dead ... dead from the diabetes.

Welp.  Good to know that I don't have to go with the "good" response here. 

"How's Joe's diabetes?"

The words "good" or "bad" are too polarized.  I need something more general to describe Joe's diabetes on most days.  But then there are some days that "good" sums it up.  And then there are days that the word "bad" is perfect.

My general answer when asked "How's Joe's diabetes?" will be:

Joe's diabetes bears watching and managing; not just day-to-day, but hour-to-hour. 

In response to Joe's~school~mate's~mother about her friend:

I live with knowing that there is that possibility that I will get "the call" someday.  You know, "the call" that your son was found down and has been taken by ambulance to the hospital.  I live with being as prepared as one can be for walking in on an unconscious (or worse) Joe.  I do not live in fear.  I just simply live knowing this is my reality. 

A day-in-the-life of trying to explain being a parent of a child with Type 1 Diabetes.

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.

Sharkie

A couple of mornings ago...

I forgot that he was going to be getting them.  I remembered, yes...that the Orthodontist said that he may need a few braces on his top teeth to pull the disobedient tooth forward.  The Orthodontist stated that the said tooth would need to be shoved or pulled into position to prevent future possible "pulling" of the tooth and for "cosmetic" reasons to keep Joe's self-esteem intact.  I then proceeded to call Joe "Sharkie" (a nick-name I had given the tooth)...after that comment, the Orthodontist quickly realized that the said tooth would not be the cause of self-esteem destruction.

These new braces mean no more Starbursts for LOW treatments.  The sticky nature of the candy can pop-off a bracket in no time.  So, we are back to Glucose Tabs and juice.  This made me ponder our choice of Starbursts for treating the lows in the first place.  They are sticky ... probably not good for Joe's teeth, ya think?  Furthermore, the unwrapping of the candies must be frustratingly difficult for low, shaky hands and digits.  I will not be around to "mother bird" him forever.

A day-in-the-life of diabetes with braces.

Today I Remembered The Shin Pads!

Before we get to Joe, Bridge got ahold of my phone the other day.  Here is what I found:

OK...onto Joe:

A youngish lady was standing at the back of an SUV parked at the field entrance.  She was checking in campers, while another fella sat on a fence post handing out soccer balls to each attendee.

Thought feed went something like: *Nah...I don't think this is where I tell them about the diabetes business*

They instructed us to move on down a wooded path to the fields.  Camp-goers were gathered down and to the left; the coaches were way out on the fields straight ahead.  Joe immediately peeled off to the left.  As for me ...  I was the only parent approaching the coaches.  I identified that I had a camper with medical needs.

Joe attended a half day soccer camp yesterday in 88 degree heat with high humidity.  The camp coaches are British, which in my opinion makes everything they say sound nice.  The camp is close to our home; it lasts from 9 to noon.

Me to coaches:  "My son, Joe Maher, has Type 1 Diabetes."

(for some reason I then kind of wiggle the Woodchuck side-to-side ... like the Woodchuck represents the diabetes)

I continued:  "What time does snack take place?"

One of coaches (in British accent):  "Haf pas ten."

The "haf" and the "pas" threw me off, so I asked to clarify:  "Ten?"

The young woman coach could see my confusion and responded:  "Ten thirty."

I then unzipped the Woodchuck and showed them my plan:  Glucometer/sugar/snack/track phone and pointed out my cell phone number, which is written right on Woodchuck's lid.  Joe would be checking a blood sugar at snack time.  He would call me with his number and he and I would discuss how much, if any, of his Go Lean Bar (snack) he would bolus for.  I then briefly went over lows, their immediate threat to his well being and pointed out my phone number again.

Me to the coaches:  "Do you want me to bring Joe over here so you know which one he is?"

Coaches:  "Nah...Joe Maher...right?"

Me, a little wary:  "Yea"  (wiggling the Woodchuck again) "he'll be the kid with this bag".

So, I left him.  I left Joe at a half day camp with no intention of returning until noon.  It was a first.

9:42am I get a call.  It is Joe.  It's his quiet voice; the I'm~not~feeling~good~and~not~having~fun voice: "I'm 84.  I'm calling for your opinion."

My opinion:  "Eat two Starbursts and then your snack now Joe...for free."

Apparently Joe had an opinion about my opinion: "No, mom... that is for snack time..." and then something was mumbled about the heat.

My other opinion:  "K.  Do four Starbursts then."

We hung up.  I was worried that he was just slumpily sitting on the sidelines not feeling well.  An 84 in the early morning is not a safe place for Joe's blood sugar to be.  He usually has a ginormous post-breakfast spike (like into the low 300s) and his settings are adjusted accordingly (i.e. he receives a 1:10 breakfast ratio...with a 1:60 morning snack ratio to put the brakes on the breakfast insulin).  After all this thought and careful planning that doesn't even seem like "thinking" or planning anymore because I have been doing this for like seven years now...I realize that I sent the little guy to soccer camp without shin pads.  Ugh.

I called his phone at 10:00, hoping that he would not pick-up.  If he did pick-up, it meant that he was not feeling well at all.  He didn't pick-up. 

10:30am another call from Joe:  "Hi, I am 117 and it is snack time."

Me:  "Eat the Go Lean for free...have fun! ... oh and sorry about  the shin pads."

Him:  Mumbling and grumbling about the heat.

A day-in-the-life of taking diabetes, but not shin pads, to soccer camp.

Going Well!

I promise I did not "wear" the headlamp as I dropped off Joe to his friend's house for the sleepover last evening.  However, for your viewing pleasure I did ....

I thought the "head lamp" was a thoughtful token for night-check-ease.  Salami and pickles were brought for Joe's snacking pleasure to veer him away from heavy carb snacking into the night.  In general, Joe does not eat carbs after dinner.

So far so good.  I have not heard from Joe or Joe's-friend's-mom since 10:30pm last night.

Up to that point Joe had consumed pizza (2 slices), ice cream (1/2 a cup, which he thought was a cup and we bolused for a cup, and he then called me back to say it was 1/2 a cup and we then made up the difference with Starbursts, which I believe ultimately lead to a low...but whatever), salami, salami wraps (cream cheese spread on salami that is then rolled up into little cigar-shapes), and pickles. 

His numbers have ranged from 55 to 270. 

I'll take it.

A day-in-the-life of support pancreating remotely.

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.

"HHH...e.l.p."

Literally thinking of "Cutting The Cord" ... more on that soon...

 "Ahh . ... he (a.k.a. Joe) told me that we might need to leave a door unlocked for you... ah, so you could come in and check him in the middle of the night." ~ Joe's-friend's-mom  to me.

I paused to see what her reaction was going to be so that I could, in turn, mirror it.  She started laughing.  So, I then started laughing.  Little did she know, I would do that "PLAN" if it seemed "normal" and "OK" to her.  Little did she know that Dave has indeed climbed through muddy ravines...in the dark... at 2 am ... to access Joe's blood, while he attended an overnight Hockey Camp.

You see..

Yesterday, after school, as I was wrapping-up from work ...

Joe phoned:  "Mom! I was invited to a sleepover...for Memorial Day Weekend! ... on this Friday! ... can I go?!"

My eyes filled:  "Sure bud.  We'll have to figure out the diabetes." (sErIoUsLy, why did I even need to mention the "diabetes part"?  I hate that I did that.)

Joe has never spent the night at a friend's house.  He is now ten years old.  Seven of his ten years have been lived with diabetes.  We have had friends over to our home for the night, but never vice-versa.  When he was younger, it seemed too daunting, to complicated.  Then the issue just seemed to slip off the radar.  For me it did anyway.  Not sure if Joe has given it much thought over the past few years.  I am ashamed to admit that I did not make this happen for Joe earlier.  I simply could have just asked a friend to have him over; friends that know diabetes fairly well after hanging with Joe and I over the years.  I simply just needed to ask;  to ask for "hhh...e.l.p".

As I was pre-discussing the "pre-slumber party diabetes plan" with Joe's-friend's-mom, I was apologetic when mentioning the 2 am check. Asking for "hhh..e.l.p." is difficult for me; to a fault.  I struggle to do it even for the wellbeing of my child.

"Help" (transitive verb) ~ 1) to give assistance or support; 2) to make more pleasant or bearable.

A day-in-the-life of accepting assistance and support, in order to make Joe's life with type 1 diabetes more pleasant and bearable.

I Don't Have All The Answers

"I knew about the highs and not taking care of my diabetes and losing arms and legs...but I did not realize I could feel so sick."  ~ Joe talking to me about his death~ate~a~cracker ketone sickness feeling from the other day.

"...so without insulin, would I just feel like that?  I would feel that sick until I died?"

*Uhh oh.  Not the dying business.  Please don't ask.  Please don't ask.  Please don't ask.*

"How long do ya think that would go on for?  The dying?  A year?"

*Ohhhh Man.* 

*Of course, he had to ask.*

"I dunno Joe.  Maybe a week or two?"

No one or nothing can really prepare you for all the conversations you will have with your children.  Limb loss and death have got to be amongst the toughest.  This talk of arm-less-ness and leg-less-ness and life-less-ness ("less-ness-es" added in to "lighten" the mood here) made me squirm as a parent.  What to say and how to say it; I do not know. 

Yesterday...




...Joe "raced" to CURE diabetes.

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