Upping The Ante

It's summer music time again.  This nurse-free program offers music activities every morning through July, with instrumental and choral fun.  I've come a long way since the first year she went.  I've even accepted the chaos which is the last day's honestly advertised 'Junk Food Fest.'

This year my daughter asked to add on the musical theater part of the program.  We've seen these musicals each year and they're amazing, and particularly so considering they're put together over the course of only 4 weeks.  She really enjoyed her theater experience at school this year. The only reason to say 'no' was diabetes anxiety, but our household's policy states that diabetes is not a good enough reason to say 'no' to anything.  So I signed her up.

Here's the thing: she's now at this program from 8:30-2:30 with nobody to help her with diabetes stuff.  The staff know she has diabetes, as do a couple of friends there, but the responsibility for checking, treating, and bolusing is on her.  It's a big responsibility. 

We've set up a system, of course.  She texts me when she checks mid-morning, and again at lunchtime.  I text back any advice.  Her lunch carbs are written down for her.  I can be at the school where the program is held within 5 minutes if I need to be.

This situation seems, at times, perfectly reasonable.  I'm not asking her to do anything that she doesn't ordinarly do on her own at home.  I am always but a call or a text away if she needs help.  She's proven herself responsible in the past, so I trust that she will do what she needs to do.

Yet somehow in the back of my mind (or in the pit of my stomach), I can't help feeling like I've bet it all on black.

Wordless Wednesday: The Glucagon Edition

Note the expiration dates.

I picked these up on the same day at the same pharmacy.

It's the same scenario every time I refill the glucagon there.

Every kit we have expires in a different month (or year).

I can barely keep track of when we last did site change.  How am I supposed to remember when to replace these?!

Needs More Insulin

We visited the endocrinologist this week. 

In the weeks leading up to a visit, I am usually motivated to keep a more detailed log and to scan through the meter's averages and graphs.  I try to identify any major issues we need to discuss.   Sometimes I am able to fix a few things or at least narrow down the issues to a few really tricky ones.  I do this so that we can spend our endocrinologist time on issues I really need help with.

This time I tried to think about it.  I really tried to weed through all of those numbers and find the places we needed to change things.  I didn't know where to begin.  I gave up.  It turns out my confusion was warranted. The doctor's initial impression?

"She needs more insulin...like most of the day."

Her A1C was up, only by .3, but after going down a couple of times in a row it wasn't great news.  It wasn't surprising either.

Many things had changed since winter.  She'd added height.  She'd added weight. Yet she was missing a sufficient quantity of a key ingredient.

So we added insulin to almost every basal rate.  We added insulin to almost every carb ratio.  We added insulin to the correction factor.

We've been doing diabetes for ten and a half years.  I'm able to tweak a basal rate here and there, or recognize when the correction factor is no longer correcting.   I'm a person who, given sufficient knowledge, tries to solve problems on my own before asking for help.

Yet once in a while, particularly with a growing child, the time comes for a major overhaul. In many ways, it was freeing to hand that whole pile of 'undesirable' numbers over to the endo and say, 'please fix this.'   Now we'll watch and see if he did, and hope he at least got close enough that I can trouble-shoot the rest from there.

Size Matters

*This post is my June entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/june-dsma-blog-carnival-3/  The prompt reads, "We’d like to know: How do you select the diabetes devices you use? To others looking into new or replacement devices, what would be your best advice to someone shopping around?"

My daughter was 2 when we chose her first insulin pump.  She was tiny, and she needed tiny doses of insulin.

Our endocrinology team had brand of pump they were most familiar with, but encouraged us to do our own research and to come back to discuss.  I ordered brochures from all the major pump companies.  Side note: that's a very old-fashioned sounding sentence and makes me realize how much the world has changed in 10 years.  There was precious little online research involved in this decision.

I spoke with people in the support group I was attending at the time.  I compared all of the information I got with my daughter's needs and my own concerns.  I went back and discussed our options with our diabetes team.  I concluded that size does, indeed, matter.

Size of dosing mattered most, and at the time Animas was the only pump which could deliver basal increments of .025 units.  In such a tiny person, the flexibility of really fine-tuning those basal rates seemed important.  Indeed it was. For the first year or so on the pump she had an overnight basal of .025 units for a couple of hours every night.

The size of the pump mattered too.  I needed to be able to tuck it away.  No matter which brand we chose, a pump pack would be its home.  Yet even a half an inch would make a difference in how much it showed, and how it fit under a shirt, dress or overalls.  Animas was best in this category too, being the smallest option on the market at the time.

Other positives came up in my research, including good customer service, good initial training, and forward thinking product development.  There was no difference in insurance coverage. The only downside was that this was not the pump our diabetes team was most familiar with.  Yet they were all for the tiny doses and tiny size of the Animas pump and agreed it was a good fit for our daughter.  We've been quite happy with it ever since.

So what advice would I give other diabetes device shoppers, the prompt asks?  Gather information from as many sources as you can, while considering your own unique needs. Recognize that your diabetes team's suggestions are based on experience.  That can be helpful, but could also mean they're suggesting primarily those products they're most familiar and comfortable with. Ultimately, the product will be yours, worn on your body, or carried everywhere in your bag.  It needs to have the features you consider the most important for you.

Another Site Change Twofer

As a rule, we have very few site change issues, and very few sites which conk out on us.  We had gone for many months with nary a hint of a problem.  Then we apparently entered the dark hole of terrible site issues.  Last week's glitch-ridden site change seemed like maybe it should fulfill our mishap quotient for a while?

Alas, somehow the diabetes gods did not get the memo.

Yesterday started as just a run-of-the-mill, because it was time, site change day.  The old site came out fine, and all of the pump-related tasks were uneventful.  Finding a new site is more challenging in swimming season since she really likes it to be under her bathing suit.  An acceptable spot was negotiated.  The 'o.k.' was given.  I squeezed the inserter, and it popped in.  Sort-of.

The tape bunched up into layers which I had to very carefully unstick before I could pull the inserter out again.  A closer look left me wondering.

"I think it's in."

"Whaddaya mean, you think it's in?"

Well, I can see a little more of the tubing than usual, but it's definitely in...does it feel in?"

"Yeah...I mean I think so?  Can you push it further in?"

"No...the tape's all stuck down.  And anyway...I'm not sure if that even could work?"

"I think it's o.k."

We finished the post-insertion details and headed upstairs.  Periodic questions about how the site felt were met with one word answers such as "fine" or "o.k."

Two hours later, just as I'm finishing  dinner, "I think we should change this site."

It was tempting to blurt out, "you're telling me this now???"  I'm certain my face said it, even though I held my tongue.  The rational side of my brain urged me to keep calm, to be proud of her for still thinking about it and recognizing the need to act.  Regardless of the timing, bolusing for a carb-heavy dinner with a questionable site seemed like a bad idea.  I did my best to put dinner prep into suspended animation and we headed back to site change central. 

The old one (from 2 hours before) was bloody and awful.  The new one went in better. While the tape bunched again (atmospheric conditions? any ideas?) the cannula was definitely all the way in and it felt 'great.'  High praise indeed.

I hope we've now fulfilled whatever diabetes karma debt we were up against.

Thankful

Living with diabetes in Suburbia, USA is not without difficulty. We get frustrated dealing with:

• Meter problems and insurance issues
• Site changes gone bad
• Worrying about children out without us
• Lost sleep
• The challenge of guessing carbs
• Medical professionals who don't live up to our expectations
• The Pharmacy
• Nutrition labels
• Whether a bionic pancreas will ever come on the market

And that's just a list of things I've blogged about this spring.

These issues are legitimate and challenging to me, and to many of you.  Yet some days it's important to be reminded how much harder it could be.

This video about children living with diabetes in Ethiopia puts it all in perspective.  Please take a few minutes to watch it.

After viewing this, I'm incredibly thankful because:

• My child did not have to move in with other relatives in order to access care for her diabetes
• We don't have to dig a hole in the ground in which to store our insulin
• We can get in our car and drive to our diabetes clinic
• We own at least 4 glucometers
• We have a refrigerator and pantry full of food
• Our doctor's office has a waiting room, allowing us to get many minutes of uninterrupted care
• My child has access to multiple types of diabetes technology
• We are equipped to educate ourselves in the best ways to care for her
• There is more than one pediatric endocrinologist in my country.

Of course we must continue to fight the good fight, counting every carb, urging research and demanding the care our insurance should provide.  Yet there's value in keeping in mind that the resources we have are immeasurably far beyond those depicted in this video.  The difference borders on incomprehensible.

***This video was produced by Novo Nordisk to document their charitable efforts. If this video left you curious about how to help kids in similar situation, check out the International Diabetes Foundation's Life For a Child program, which also provides much needed supplies and education to children in developing countries.

To Go or Not To Go?

One Friday night, my daughter went to a school-sponsored event with her friends.  It was a two hour talent show in the school auditorium.  The auditorium is by far the hottest room in the school and it had been in the 90's for days.  There was no audition for the talent show, so there was sure to be a wide range of 'talent' represented.  There would be 200 or so middle-schoolers 'cheering' for their friends at the top of their lungs.

I still wanted to go.

My daughter did not want me to go.

"Nobody else's parents are going."  This turned out to be a bit of a stretch, but much truer than I had assumed it was.

I spent the day weighing out the situation.  As far as I knew there was no food involved.  She would have just eaten dinner.  I could make something familiar and decrease the risk factors for a low.  She'd have her phone with her. She was going with a group of friends, who would also have their phones with them.  She'd been to plenty of other things without me, but somehow this one felt different.

The concern was similar to the movie theater birthday party, where she was with people she knew, but all eyes were focused elsewhere.  If she started to show symptoms of being low, would anyone notice?  Would she be so distracted by the show that she wouldn't notice?  These concerns were compounded by knowing that while there would be teachers there, they weren't going to have their focus on her.

The end result?  I let her go with her friends.  I sat in the parking area until I saw them enter the building.  I texted her just before the show was to start, under the auspices of finding out if they got good seats.  I went home and cleaned the kitchen.  I met a friend at a local (read within sight of the school) pub for a glass of wine.  I picked her up at 9 and she came out hot, but happy.

In the end? I'm glad I didn't go.

Playgroup

During my daughter's baby and toddler years, we attended a great playgroup in the community center gym. The local 'mothers club' had collected a plethora of toys and secured a closet in which to store them.  Every Friday, the toys were dragged out into the gym and children from birth to four were invited in to play.  A weekly donation of $2 got you two hours of playtime, a snack and juice, and even a cup of coffee for mom. 

My daughter and I, for the most part, enjoyed it.  She liked the 3 different play kitchens, the giant bouncy balls and the dress up clothes.  I liked meeting other mothers and having somewhere to go, particularly on frigid winter mornings.

This was one of the first places we brought diabetes out in public.  One or two other moms knew my daughter had diabetes, but I imagine many wondered about us; especially at snack time.

The kids would all sit on a couple of blankets laid out on the gym floor to eat their snacks.  Most mothers would then head for the coffee or sit on the bleachers and chat.  We'd head over to the side to check her blood sugar.  I'd then vet the snacks for carbs and determine whether she would eat the playgroup snack of the day or an alternative from my bag.  She was on NPH at the time, so very restricted at snack time. I would then awkwardly hover over the eating children.  I needed to be sure she ate her snack, and didn't eat anybody else's. What if she got her hands on somebody's juice? When snack time was over the children would be instructed to throw away their trash and go back to play.  More often than not, I'd have to drag my child over to the bleachers and make her finish her goldfish before she could go back out there. 

At home, diabetes was becoming part of our routine and its intervals were becoming second nature. The contrast of being somewhere diabetes wasn't part of the routine was challenging for both of us.  It was isolating to be the mom obsessively observing toddler snack time instead of sharing potty training tips over coffee.  My daughter desperately wanted to get back and play whether she'd finished her snack or not.  She wanted the playgroup snack whether it was goldfish (o.k.) or donuts(not o.k.).  She was really little, and any parent can therefore imagine her reaction to not being allowed to have her way.

In retrospect this was the beginning of a long series of moments when we brought diabetes along with us despite its challenges.  Yes, there were 2 or 3 days when I had to give up and bring her home because she melted down at snack time.  Most weeks, though, the fun far outweighed the challenge.  I wasn't going to let the possibility diabetes might throw us a curve ball stop us from enjoying a happy morning out.   A few years have passed, but that last bit remains just as true today.

Longest Site Change Ever

It started with a mid-morning, out of nowhere, super-high blood sugar.

"It's site change day, Mommy," my daughter said helpfully.

So off we went to our favorite site change spot in front of the basement t.v.  At which point I remembered I needed the new insulin from the fridge.  Upon my return, I saw that a suitably junky t.v. show had been chosen for the occasion.

I applied unisolve to loosen the old site, IV prep to sterilize the new.  I drew up the insulin into the cartridge.  Bubbles.  Tap, tap.  Bubbles.  Empty and refill.  Bubbles.  I whacked the cartridge against the book case a couple of times.  The bubbles disappeared.

I then pulled out the old site, opening a Hoover Dam of blood.  Yoga moves ensued, elevating the site above heart level.  Several tissues were put into action.  I desperately tried not to show how grossed out I was.  The blood finally stopped.  I retreated to wash my hands.

The first segment of her t.v. show was finished. It was time to replace the pump's insulin.  I removed the old cartridge, and pressed 'ok.'  "Full rewind required," flashed back at me from the screen.  Of course this had to be the day when the pump needed extra time to do a self-check. I eventually loaded cartridge and primed. Once I'd confirmed the bleeding had stopped for good, it was time to insert the new site.

The traditional three choices were offered, including one 'new' for a super-special prize.  She chose it.

Courage was hard to come by for her to allow me to pull the trigger.  After several minutes crouched on the floor, I was beginning to loose both patience and the feeling in my feet.

I threatened to revoke prize privileges if she took any longer. I heard a faint 'o.k.'  and squeezed the inserter.

"OW.  Ow ow ow ow ow.  OOOOOWWWWW."

This is not an ordinary reaction for my daughter.  Sometimes she'll utter a faint 'ouch,' but the pain subsides quickly.  This was clearly different.  We waited a minute.  I filled the cannula, and when she said she thought it was getting better, delivered the correction bolus for the high blood sugar which had begun this increasingly unfortunate chain of events.

"OOOWWWWWWWW!"

Something was certainly wrong with this site.  Or at least probably wrong with this site.  With a busy afternoon ahead, it seemed smarter to start over now than to wait and see. So I got more unisolve and i.v. prep. and noted that her t.v. show was now 2/3 over.  I took the new old site out. There was more yelling.

We then had to negotiate a spot for the next new site, not near the gusher spot and not near the painful spot. 

Hovering around the 25 minute mark, I got the 'o.k.' and popped the new new one in.  This time, there was nary an 'ouch.' 

I filled the cannula again and wondered whether the insulin I'd given to correct the high was doing its job or not.  I decided I had to assume at least some of it was, particularly with a softball game on the horizon.  I guessed correctly, and the afternoon was unremarkable diabetes-wise.

The morning, however, was remarkably awful.