Friday, December 21, 2012

Ten Years

'Today's the day,' I thought as I bounced out of bed. I threw on shoes and a jacket and ran out the front door.  I ripped my newspaper out of its plastic bag and impatiently flipped it over to see the front page headline.

"Govenor approves ...."

Too late to make the front page, I guessed.  I quickly fired up the news app on my phone and started to scroll.  Nothing.  How could this be?

There must be some mistake.  I clearly remember the conversations ten years ago today.  I was told not to worry.  I was told to be patient.  I was told developments were occurring every day.  I was told that in 10 years there would be a cure for diabetes.

Ten years ago today, as my little girl laid helpless, full of tubes and hooked to countless monitors, I was told to be grateful for what I had.  And indeed I was and continue to be grateful that she survived the trauma of diabetes' onset.  I'm grateful for each and every helpful person, vial of insulin, and useful piece of technology we've encountered since that terrifying day.

Yet every extra day she spends living with diabetes makes me increasingly eager to open my newspaper one morning to find that headline.  The one that tells me it's all over. 

It turns out today is not that day.  It's unlikely tomorrow will be either.  Yet I live in hope that some day, 1, 5, 10, or 27 years from now will be that day.  After all, someone in an emergency room somewhere today must be being told not to worry because "there should be a cure in less than 10 years."

Monday, December 17, 2012

Worry

The tragedy in Newtown CT and its aftermath are heartbreaking.  There are difficult and complicated questions to be addressed.

Yet, for some of us left behind, one of the repercussions feels familiar.  It's the anxiety of dropping a helpless child off at school, in the care of others.  Those of us with children with diabetes (and countless other medical, emotional, or mental health needs) are particularly familiar with this feeling. 

So this morning, as I dropped my daughter off at school, unable to not think about Friday's terror, I summoned some coping skills I've used before. 

I kissed her goodbye, told her I loved her, and confirmed our plans as to how and when she will return home.

I watched her cross the street with the crossing guard and walk to the school doors. 

Then I brought to mind the adults she will spend the day with, reminding myself that I trust them and that they have her best interests at heart.

Each day, though some days more subconsciously now, I remind myself that the staff at school know how to take care of her.  They know about her medical issues and how to address them.  There is a plan in place for her care.  Beyond that, her teachers and other school staff are concerned about her as a growing and maturing individual and do their best to help her in any way they can.  This is, of course, their job.  But from what I see from the outside, she's been fortunate to have teachers and other staff members who take it an extra step.

By extension, I must then trust that in all other ways her school is as safe as possible.  There are plans in place for many types of disastrous situations.  Communications from the school district say more plans are being made.  She is in the care of good and kind people who have their students' best interests at heart.

There is no way to be sure what each new day will bring.  Potential hazards lurk around every corner.  All we can do is prepare for foreseeable eventualities as best we can. Then we take a deep breath, and send our children off into the world, trusting those in whose hands we leave them to do their best to keep them safe.

Thursday, December 13, 2012

How Low Is Too Low?

An hour or so after tucking her in, I checked my daughter's blood sugar. 

85.

What a great number.  Unless it's 9:30 at night.

At 10:15, she was still 85.

At 12?  85.

Bizarrely consistent.  Maddeningly sleep depriving.

I set a temporary basal rate and set the alarm for 1:30.

150.

Good enough to set the alarm for morning.

Breakfast number? 89.

On the one hand, seeing 85 for every blood sugar check would be excellent.  It would, of course, require a cure, but a girl can dream.  At 9:30 at night, sans cure, it's frustrating.  It's not really low.  During the day, I'd certainly let it go and have her check again in a little while, or if she started to feel it. 

Yet when she's sleeping, it's a tough call. Ten points lower, and I'd be reaching for a juice box, but 85 is no reason to wake her from much-needed sleep. Even a smidge of juice would probably raise her into the high 100's, less desirable than 85.  Yet 85 is not comfortable.  It's a quick drop from there to significant hypoglycemia: a dangerous proposition in the middle of the night. I should have set the temp basal earlier on in this scenario, if for no other reason than for my own peace of mind.  But otherwise, I don't know what else would have helped.

The worst part is that the reason for hours of straight 80-somethings was not some fabulous basal rate tweak or the discovery of a perfect dinner menu. 

It was the cold she woke up with this morning. 

Monday, December 10, 2012

Expansion

Last week, I announced my intention to explore new territory as far as pump sites were concerned.

Monday evening, I informed my daughter of this plan.  I followed my own advice and began with an explanation of the medical importance of site rotation. She'd heard the spiel before and understood.  I made sure there would be plenty of time to choose among three possible locations, and for both of us to work up our courage.  I laid out the reward system.

Despite my thorough approach, I expected a different reaction.  Reluctance.  Fear.  Tears.  Outright refusal.  All were possibilities.  As a rule, suggestions of new areas have been stubbornly vetoed in the past.

Instead I heard, "You mean I really get a prize every time?"

Never underestimate the power of tic-tacs or plastic penguin plates in convincing an 11 year old to try something new.

"Yes...as long as it's a new spot."

"And if we do 4 in row, we really get to go out for frozen yogurt?"

"Yep...we really do."

"O.K., but I'm only doing it for the prizes."

We've started with small excursions from the comfort zone. She was surprised to find she liked the area near her hip quite a bit. We tried a higher spot, and a lower one, experimenting to see what was comfortable.

We'll continue on with these small steps for a while, essentially expanding the current circle by 3-4 inches.

Eventually, I plan to throw in a really new spot (belly, thigh) as one of the three choices.  She won't choose it, but she'll think about it. Then I'll up the ante again.  Big rewards for entirely new body parts, and back to the usual prize every 3 times for the expanded territory.

Provided the next site change is successful, we're off to the frozen yogurt shop for a reward.  Since my own prize is now in sight, I might be brave enough to try her hip again.  Angling the insertion set there felt precarious, but in the end, it worked out fine.  Practice makes perfect.

Unlike my daughter, the prizes are not my primary motivator here.  Her health is my first concern. Yet, the truth is, I'm already wondering if there will be a fun new seasonal yogurt flavor to try.



Wednesday, December 5, 2012

Sad

We really do our best around here to move on with life despite diabetes. It doesn't get a say in where we're going, or a choice of how we get there.  It's constantly with us, and does get its needed attention, but we make every attempt not to let it weasel its way into places it doesn't belong. 

Yet, this philosophy isn't fool-proof.  Diabetes has its ways.  Often it doesn't even need a major ploy to get to us, just a well-timed nudge.

Take last night. 

My sleepy daughter reappeared at 9:15 p.m. after being tucked in at 8:30.  Wearing her pink and red angry bird jammies, squinting in the living room light, she said, "I couldn't sleep.  I'm 65.  I'm also out of test strips in my room."

We rose from the couch. I fetched the juice and my husband fetched the test strips.  There was a dreary quiet about these tasks.  I walked my daughter back to her bed, retrieved her stuffed rabbit from under the covers, and gave her a hug.

"You ok?"

"Yeah."

"I'll check you again in a little bit. Hopefully you'll sleep now."

"I hope so.  I'm tired."

"I know.  I love you."

"Love you too."

Sometimes I can tough out this routine mindlessly.  Juice, kiss, bed.  All in a day's diabetes work; better luck next time.

Yet last night, it just felt extraordinarily unfair.  All she wanted to do was get a good night's sleep and wake rested for school. Instead she was up needing juice and worried about her supply of test strips.

It made me sad.


Monday, December 3, 2012

Location, Location, Location

Since my daughter started pumping insulin 8 years ago, we've used the same territory for her pump sites.  It was chosen when she was 3, because for her it was out of sight, and less tempting to mess with.  Now, to her, it's just where her site goes.  The endocrinologist agrees this general vicinity may be best, since she's on the thin side and some of the other possible spots (belly, arm) 'don't have much meat on them.'  Yet he's offered ideas for expansion.

Sites could be put lower or higher, over to the hip, or down to the thigh.  In the past this suggestion has been more theoretical. We weren't seeing blood sugar issues, or scar tissue, or infections.  It's something we'd try once in a blue moon when she was feeling very brave and I was feeling very patient.

I'm thinking we're now going to have to get more brave and more patient. Failed sites used to be scarce around here.  Yet recently, there have been a few stubborn highs which have quickly resolved themselves with a new site. Nobody here is going to be happy about the change. My daughter is familiar with how the sites feel going into her favorite spots, and how they feel under her clothes.  I've become confident inserting the sites in these locations too.  Those new angles and new topographies make me nervous.

So how do we move forward with this?

I started here, writing about it, to sell the idea to myself.  I need to be positive and convinced it's what we have to do.  Then I need to sell it to my daughter.  What route to choose?

There's the laying out the facts route:  You're having high blood sugars.  They're not healthy.  We need to try some new spots and see if that helps.  You know - the ones the doctor always suggests as alternatives? When he talks about scar tissue?  We need to start using them.

There's the buy-in route:  We have to chose some new spots.  I will allow you to choose what new spots.  I will make sure we have plenty of time for each site change so that you can take your time choosing, and so that there is no hurry to insert it before you feel ready.

Lastly, there's the reward route:   Currently, she gets a 'prize' for every 3 site changes without excessive drama.  Perhaps now there's something in it for her every site successfully inserted in a new spot.  Or maybe a bigger reward for a week or two of success.  Or both.

It will need to be a combination of all three, I'm sure.  She needs to know why: the facts part.  She needs to have some control over the situation.  Getting to choose which fresh spot gets the jab seems like the least I can offer.  Upping the ante on the reward part will hopefully be the bit that closes the deal.  I'll stock up on tic-tacs and hair accessories to be doled out for each success, and probably throw in a mother-daughter frozen yogurt outing if (when) we make it through 3 or 4 rounds of this.  I'll deserve a reward too, after all.