Oh YAY! A First!

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

Yesterday...

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

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

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

 

 

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

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

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

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

"OK".  

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

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

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

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

"My day was going good until this issue."

"What makes it so bad now?"

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

 

Very true.  It's annoying Joe.  

 

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

 

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

 

 

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.

"Ma ... This is WAY too hard core for an Elementary School Field Trip..." ~ Joe Maher 2/11/2012

The title ... word-for-word ... was muttered by Joe, outta the blue, as we traversed the ice rapidly and efficiently aided by a solid, steady, hefty tail wind. We were keeping our eyes peeled for cracks and fissures that we would need to avoid or carefully cross.

Yesterday I took Joe to skate a large bay of the lake, Lake Champlain.

The skin on my hands was losing it's pliability as it was exposed to check Joe's blood glucose prior to our departure. I checked. Warmed my hands. Tied one of his skates. Warmed my hands. Tied his other skate. Warmed my hands. And then dealt with myself and my skates. Yes, it was that cold. I believe with the windchill the temperatures were bottoming out a bit below zero.

As we skated out to our destination, an island with caves, the snow looked like desert sand blowing under foot. Ice sail boats were gliding effortlessly across the glass-y surface in the distance. Ice shanties and lined fishing holes were dotting the ice. Sheets and chunks of ice had been pushed up as the lake ice had split and cracked and fresh water from below emerged and froze. The scene was a bit surreal. We were "extreme skating" in a sense.

When I packed for our adventure, I felt the nag of the "what if's" plague the periphery of my mind. Not only the normal ones... like what if Joe or I fall in the lake and croak? But the "diabetes what if's". What if I don't have enough sugar? What if the saline solution freezes for the glucagon reconstitution? What if I need help? Nothing scares the BEJEEZUS outta me more than being away from Joe's diabetes supplies and sugar sources. Nothing.

Ice Sail Boat

Cave

Since Joe's diagnosis, I have been determined to never let diabetes interfere with his innate right to be an active child. He should never not do something because he has diabetes. As many of you know, Joe is an active boy and his activity level seems only to accelerate in the winter months. Managing type 1 in the cold can be a mechanical, a logistical and a blood sugar nightmare.

Here are some tips that I have picked up along the way. Trust me, I learned many of them the hard way.

1) UNA-BOOB ~ Glucometers only function at certain temperature ranges. I have had the glucometer not read Joe's blood sugar number due to the cold. It would give me an error message. I have found that tucking the glucometer into the inner breast pocket of my coat keeps the glucometer warm enough so that it may function.

2) HOT HANDS ~ If I want to keep the glucometer in "Woodchuck" (our diabetes care on the go bag... see right hand side-bar under "Joe's Pancreatic Pit Crew"), I house an "activated" Hot Hand hand warmer in a child's sock, and then place it in "Woodchuck" to keep the glucometer warm enough to perform.

3) PUMP-IN-PANTS ~ If your child is a pumper I recommend pulling their snow pants up and over the pump. This keeps the pump warm by using body heat. I have had pumps lose their prime and stop delivery when not adhering to this tip.

4) STRIP WHEN YOU ARE READY! ~ Don't pull the test strip out of the canister until you are ready to roll with the blood sugar check. I also cover the blood receiving end of the strip with a paper towel square (I cut up paper towels for blood wiping and store them in the glucometer case) until the finger is lanced and the blood bubble is ready to be "tested". When I have not done it this way I have gotten some seriously false LOW numbers.

5) As with any activity... CHECK OFTEN ~ I check about every 30 minutes to an hour due to Joe's tendency to drop quickly while participating in winter to his heart's content.

6) MAKING THE LOWS GO ~ Joe runs low while playing in the cold. He has had a "LO" reading on his glucometer while he is running up and careening down sled hills. He has had numbers in the 20s and 30s. When he was three, four and five I would decrease basals by as much as 80% about an hour prior to outdoor activity. Now that he is older, I find that I rarely need basal reductions. I usually feed Joe "free carbs" prior to prolonged outdoor winter activities. I have found for us, the free carb feeding to be the easiest and best way to manage this sort of thing. I usually give Joe 3/4 cup to one full cup of milk prior to heading out to sled or to skate. This seems to hold him for about an hour... then I boost his number as needed with fast acting sugar sources.

7) STARBURSTS BECOME ICE GUM ~ Starbursts are extremely difficult to chew when they become cold. Avoid "gummy" or "chewy" sugar in the cold. We stick with glucose tabs in cold weather, as they are easily chewed. I am sure smarties or any other chalky sugar source will easily succumb to dentition pressure as well.

Figuring these details out did not come over night. It took me M-O-N-T-H-S... and I was frustrated... and I was in that place that we all visit now and again... that "helpless" place that our psyches take us to when we are unable to get a handle on the numbers for prolonged periods of time. Know, you are not alone and in time you will determine what works for you.

Here is an awesome "reliable" source of cold weather diabetes tips from the Children With Diabetes Website.

Do you have any cold weather tips? And p-uh-lease...don't say "Don't eat yellow snow!"

A day-in-the-life of LIVING with "D".

"Rodent-like" MacGyver-ing

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

Yesterday...

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

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

So...

Back to the story...

We are vacationing. We are visiting Cape Cod.

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

Here is how it went down:

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

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

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

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

The Chewed-Off Tubing MacGyvered Plug

It worked like a charm.

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