Monday, August 5, 2013

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.

Friday, August 2, 2013

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.

Thursday, August 1, 2013

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.

Wednesday, July 31, 2013

Retro-BUDDIES...Perpetuating the MYTH...

My buttocks were frozen to the rink bench... (about 2 1/2 years ago...)

Four times a week, for a total of about 5 to 6 hours per week I am rink side. I am there. I am a Super Hero (Wonder Woman perhaps?) Pez Dispenser on "stand-by". I am an every 30 minute finger tip pricking, blood drop squeezing, test strip toting, glucometer sporting M-A-C-H-I-N-E. I place myself in pucks-way, while attending to Joe's diabetes rink-side. If I lose any teeth or end up with stitches due to this gig, I am gonna be one pissed off D Mama. However, it is what is required to keep my seven year old diabetic son safe while he plays travel hockey for our town program.

So, back to my bum cheeks...

Well, actually back to sitting rink-side....
 
I was accompanied by a woman whom I consider a friend. I don't know her very well, but have talked with her, on and off...here and there for the past five years, or so. She is kind-hearted, sensitive, compassionate. I have no beef with her. Still don't...even after this:

Scene: I have just returned to my popsicle-glute-inducing-seat after a blood glucose check 30 minutes into Joe's hockey practice. I had given him 2 glucose tablets for a 189. (He still had some Insulin On Board (IOB) from dinner and he still has another 30 minutes of practice)

She: "Is Joe OK?"

Me: "Yeah, he just needed a little sugar to "boost" him."

She: Something to the effect of "Wow, that is a lot of work"...

Me: "Yeah, it is a lot of work. Joe's activity level definitely adds in some outlying variables here and there."

She: "So, didn't your Mom have it?"

Me: "No...no one in our family has Type 1, except for Joe."

Me: Continuing on..."It is an Autoimmune Disorder...HLA types...predisposition...environmental stimulus...virus...T cells attacking beta cells...no insulin...blah...blah...blah.....and blah (an extra "blah" for good measure)."

She: "I always tell "blank" (her son, keeping it anonymous here) that if he keeps eating sugar that he will end up getting it."

Me: "That is not the cause of Type 1." (shoot, she missed something between HLA types and Autoimmune Disorder)

She: "I know, but if I tell him that maybe he won't eat so much junk food."

Me: "Well...jeez... don't tell him that! You are perpetuating a long-standing myth and stereotype. Stop it!" (in a jovial voice...with a hearty slug to her upper arm for good measure).

What to say?  I found it interesting that it was being used as a "scare tactic"... and sad.
 
A day-in-the-life of dispelling myths, even if it is one person at a time.

Tuesday, July 30, 2013

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.

Monday, July 29, 2013

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.

Saturday, July 27, 2013

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.

Friday, July 26, 2013

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.

Thursday, July 25, 2013

Glad To Do The 4am POD Change?

We are currently having a Schnauzer Party.

You see we have Oscar (salt and pepper) and Henry (the black one) and we are dog sitting Cooper (the party mix).



A couple of nights ago... on Cooper's first night at our house...

I woke.  It was 4am.  It was my night off from the blood sugar check.  Dave was standing at the foot of our bed saying something about us having a "situation"; I think he said we had a "couple of situations" actually. 

"Joe's POD is alarming that it has failed and Henry has *expelled fecal matter* (not in those words mind you) all over his crate ... *then something was mentioned about the stench ... Henry's crate housing Henry resides in our room*"

This is where I was somewhat glad and not resentful that I know more about the PODs and insertions than Dave.  Dave had not done a POD insertion yet.  He had only watched Joe and I do one. 

I volunteered for the POD change and left the soiled crate and canine to Dave.

A day~in~the~life of our nights with diabetes and dogs.

Monday, July 22, 2013

"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.

Sunday, July 14, 2013

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.

Tuesday, July 9, 2013

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.

Monday, July 8, 2013

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 TacMastisol Hollister Medical Adhesive?

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

Tuesday, July 2, 2013

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.

Saturday, June 29, 2013

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.

Wednesday, June 26, 2013

"Joe, 911 Cannot Help You With Bolusing"


Yesterday... (a couple of summers ago ~ this is a repost because it is one of my favorites involving the phone and camp)

I was shaking my head a bit, in disbelief, at myself, dressed in black yoga pants, a long sleeve shirt, with a jacket tied around my waist. I was dripping with sweat. It was 90 degrees. I was driving Joe to a rink.

Looking in the rear view mirror, I saw Joe peering down at his phone; thinking about camp I assumed. He then started pelting me with questions. "So, I call you first?" "What if your phone is off?" "What if someone makes you turn it off?" "Then I call dad?" "What if his phone is off" "Then I call 9-1-1?"

*uhhhh*

My responses were as follows ... "Yep, call me first... but really Joe, I am gonna be there with you most of the time." ... "My phone won't be off. It never is when you are not with me." ..."No one can make me turn off my phone...nope, no one ... no how... "Nope, not even a policeman could make me turn it off." "Yep, dad." ... "I'll tell dad to keep his phone on this week."

Then to address the 9-1-1 question. Oy.

"Ah Joe, the 9-1-1 is on your phone to remind coaches or teachers or friends to call for emergency assistance in case you are unable to help yourself with your diabetes."

Joe replied "Well should I call them if I cannot get a hold of you or dad?"

Clearly my vague response above isn't gonna cut it. I am not one to mince words and have been open and honest with Joe about Type 1, so why am I struggling here?

"Joe please...please...please (insert a silent "For The LOVE of PETE" and a up~and~to~the~right~sideways heavily mascara'd fringed eyeball roll here) DO.NOT.CALL 9-1-1 if you cannot get a hold of mom or dad while you are at camp."

Joe then asked "Well when would my coaches need to call them?"

"Well Joe, they may need to call them if you went so low that you could not help yourself ... like if you went unconscious or had a seizure. The chances of that happening are rare Joe. But, we have to be prepared in case. Right?"

*please say "right"...please say "right"...please say "right" ... and drop this uncomfortable topic*

Joe then had the notion that 9-1-1 could 'help him' with bolusing if he cannot reach me. "Ah, Joe... (where to even begin)... 9-1-1 will not know the first thing about bolusing you. They can save you in life or death emergencies, but please, please, please do not call them for help with bolusing or carb counting. Trust me on this."





A day-in-the-life of hoping Joe doesn't call 9-1-1 for Diabetes Management instructions.


Tuesday, June 25, 2013

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.

Sunday, June 23, 2013

Too Many "Special" Things?

A quiet, drawn out plea of "Stay .. with .. me .. mom." came from Joe.

"You want me to read some of our book?"

"Yea"

It was last night.



His blood sugar was a bad 39.  Not that there is a good 39, but the "bad" means he was really feeling the 39.  His eye lids were closed.  His lanky bod was twisted up in the covers, curled tight in my bed.  He was motionless.  At times it was difficult to tell if he was still "with me".    As I read "Catching Fire" aloud to him, I would check in with a ..."Joe, you ok?" every few paragraphs.

Yesterday afternoon he had attended a three hour birthday party.  The party included three hours of swimming with eight of his buddies. The swimming consisted of playing "King Of The Cheese"... basically this can be described as "King Of The Mountain"... but in the pool using an inflatable cheese as "the mountain."  There was freezy pop ingestion in the hot tub where Joe reported if you wanted the freezy pop to be less freezy, you just dipped the bottom tip of it down into the warm hot tub water.  Of course the party included a couple of pieces of ice cream cake and snacks.  His blood sugar was steady throughout the party (80s to 130s).

On the heels of the party, we decided to have dinner out as a family.  You know...stuff a normal family should be able to do.  Pasta Alfredo and a sundae was ordered and consumed by Joe.  Carbs were counted.  Boluses were dispensed, combo and regular.  Within and hour after dinner, Joe's above mentioned 39 was experienced.

Joe's original response to the 39 was regret over eating the pasta for dinner.  I reassured him that it was not his fault.  I explained that I over-bolused for his meal while underestimating his previous activity at the birthday party.

Here is where he got me.  It is here where I felt the sting of the unfairness of this damn disease.

"I guess we just did too many special things today ma." 

Too many special things?  Really!?  He went to a birthday party and then out to dinner.  These are things that all kids should be able to do without a second thought. 

A day-in-the-life of  childhood and Type 1 Diabetes.

Saturday, May 25, 2013

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.

Friday, May 24, 2013

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.

Wednesday, May 22, 2013

"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.


Monday, May 20, 2013

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.

Sunday, May 19, 2013

Fickle D'

"What was he?" ~ Dave to me at 3am...

"144"

My "one-eye" started to close and then I thought perhaps maybe I should ask why he was asking. 

My "one-eye" reopened ~ "Why?"

Dave's sleepy voice yammered off something about 9 glucose tabs and something about the 40s.

Me ~  "oh, I forgot to tell you that I never bolus for all of S'mores ... just half ... he always goes low after eating them."


Joe had a rough diabetes day yesterday.

6:54 am 337
9:06 am 306
10:05 am 319 (ketones 3.9)
11:18 am 248 (ketones 2.4)
12:14 pm 319  (ketones 1.4)
1:46 pm 448
2:14 pm 422
2:53 pm 406
4:01 pm 255 (ketones 0.0)
5:35 pm 56
6:56 pm 46
7:15 pm 110
8:15 pm 77
9:00 pm 80
10:49 pm 52
11:09 pm 41
11:29 pm 65
2:30 am 44
3:16 am 144


He handled it with grace.

A day-in-the-life of fickle d'

Saturday, May 18, 2013

An Hour's Time...

The numbers never cease to amaze me.  How quickly they can turn on you; for the better or for the worse.

10:00 am-ish today:  BG: 319    Ketones: 3.9.  Site was removed; cannula was kinked.  Supposedly Joe had been in the 300s since 6am.  I never checked in with him about his pre-breakfast number until now (head hangs and shakes from side-to-side in shame).  New site was placed.  A "correction" of 2.3 units of insulin was given.

"How long will this last?" ~ Joe to me.  He is referring to the death-ate-a-cracker-feeling that he is enduring.

"Hopefully not more than a few hours."

Joe's sick.  Ketotic sick.  He's never been that kind of sick before.  Sure, he has been vomit-bug sick with subsequent ketones, but not vice-versa...the ketones inducing the "vomit-feeling" sick.

He is pale.  He is lethargic.  He is nauseated.  He is crumpled in his bed.  He should be at a baseball game right now.  And, sadly I actually tried to push him to go and play.  (I have a "competitive issue".... and ahhh... a "suck-it-up issue)."



Sometimes, actually a lot of the time these days...I forget that I am messing with a disease.  Not sure what I think I am doing with all the blood sugar checking and bolusing and carb counting and needle jabbing.

The "invisibilities" of  type 1 diabetes are like a double-edged sword. On the one hand, I am thankful for Joe's "normal-ness" in his appearance. His ability to run, jump, skate, bike, scooter, gallop, skip, and careen astounds us all. I am thankful for it; truly I am. On the other hand, what is difficult; what stings; what is painful is that the very thing I am grateful for is the very thing that detracts on why a cure is so desperately needed. It takes away from all that is done "behind the scenes", hourly, to ensure Joe's safety and wellbeing. The hidden sequella of it all can lull you into a false sense of comfort. It can lull the public into the inaccurate perception that we "have it under control". It has even, at times, lulled me into apathy and indifference.

An hour later...11:00 am:  Joe's perky voice is calling from his bedroom announcing his recovery as evidenced by his sudden urge to consume a fluffer-nutter.  BG: 249    Ketones:  2.4.  Carbs: 48.  Insulin Bolused:  2.3 units.

Things are going to return to "normal" quickly it appears.  The numbers, like I said before, never cease to amaze me.  How quickly they can turn on you; for the better or for the worse.  In and hour's time, things are drastically different.  Must be unsettling for one's body and subsequently for one's psyche.

A day-in-the-life of  an hour's time of living with type 1 diabetes.

Saturday, May 11, 2013

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.