Scene of the Crime

On Christmas eve I had the unexpected opportunity to revisit the emergency room where my daughter was diagnosed with T1D.

I was the patient this time, having passed out on the kitchen floor of my in-laws' home first thing in the morning. It turns out that I probably should have been taking better care of the bronchitis that had been brewing over the preceding week instead of powering through Christmas prep, travel and time with family. The good news was that the experience was more surreal than serious and I'm making what promises to be a full recovery from both the bronchitis and the ribs I injured on the way down.

We lived two towns away from my in-laws when my daughter was diagnosed, so the drive to the hospital at dawn was familiar. Winding roads taken at a speed slightly over the limit, the beginning of daylight, anxiety and uncertainty. At the ER entrance there seemed to be an upgraded reception area, but the interior was about the same.

I was settled onto a gurney in an ER sized cubicle room and asked a hundred questions. A team of professionals got busy taking my vitals, taking some blood, and hooking me up to machines to continuously monitor my oxygen, blood pressure and heart. And all I could think about was 16 years and 3 days before, when I stood where my husband was standing. Out of the way, but in clear view, watching my daughter being hooked up to all of those things. And the interminable wait while they tried to get blood and insert an IV into her tiny dehydrated veins. I made out much better in that department.

Near the end of my 4 hour visit I was taken for a walk around the unit while hooked up to equipment to monitor my blood pressure and oxygen - making sure nothing dropped precipitously while I was upright and moving.

We passed the cubicle my daughter had been in. We saw the conference room where the doctor had taken us to discuss her condition. We walked over the place where I had stood with the helicopter EMT when she demanded insulin be started before transporting my daughter.

When I was released, I exited through the ER doors and we drove past the helipad from which my daughter and I had taken off, headed to the big children's' hospital in the city. We drove back to my in-laws' where my daughter had been hanging out with her grandfathers, playing cards, starting a crock-pot dinner and making and bolusing for her lunch.

Why We Look Tired Today

My daughter called from school mid-afternoon yesterday to report a blood sugar in the 300's.  "Correct it and we'll see what happens by the time you get home," I suggested.

"Why do you think I'm so high?  Do you think it's the site?  I can't see it too well."

"Maybe. You've been high lately in the afternoons anyway you know.  Not this high, but let's see what happens. You'll be home in less than 2 hours."  By the time she got home, she was 82.

I didn't think of it again, at least in terms of it being an urgent problem.  I recorded it on the log sheet and vowed to take some time this week to look at the after-lunch time frame.  Her dinner number was good, and after dinner wasn't terrible either.  By 10 she was creeping up to 200-ish, which I corrected.

At 1 a.m., the Dexcom was buzzing.  HIGH.  She was 310 and apparently I'd slept through it's first attempt to alert me.  I got up, confirmed the number, and corrected.

By the time I got back in bed, the wheels were turning.  Was it the site?  Why hadn't I looked at it when she got home?  What else could be going on?  She had some Irish Soda Bread after dinner for which I approximated a carb count, but I can't imagine I was that far off.  We've been changing basal rates overnight and things were starting to even out.  What was with this number?

For some sleep-muddled reason I chose to wait out the correction and see what would happen.

Forty-five minutes later, she was higher with a diagonal arrow up.  I un-snuggled her from her covers and unceremoniously peeled back her pajamas to take a look.

"Ick" is the G rated version of the mumbling which ensued.

I gathered the super-sized flashlight and the site change supplies.  I woke her (which is her preference...I know of people who simply proceed with site changes while their kids sleep).

"You're super-high, sweetie.  I need to put in a new site.  I'm sorry I had to wake you up."

"(Unintelligible mumbles) I'd rather get up and do it.  You can just turn on the light," she said in a disgusted yet somewhat understanding voice.

I got the new site in and operational as quickly as I could and tucked her back in with a kiss.

Now, how to do the "math" to lower the blood sugar?  I'd corrected this number once, but nothing had happened.  The pump now suggested only a small amount of correction because so much insulin was on board.  Some of that insulin had probably been delivered, but certainly not all.  She'd likely missed some basal insulin too from the gunky infusion set.  I looked at the suggested dose and compared it to the total dose the pump told me it would take to drop her back to her target blood sugar. I picked a number in between and pressed 'o.k.'

An hour later, I was still awake but happy to see her blood sugar slowly trending down.  At 3:30, Dexi roused me from my dozing.  "FALLING," she said.  The actual blood sugar was still in the low 200's, but insulin was infusing and doing it's job.  I finally fell asleep.

The story has a happy ending.  Her blood sugar at breakfast was 120.  Now for another cup of coffee.

Hello Ketones

She was awake early with stomach cramps, nausea and a low grade fever. She felt miserable. On the bright side her blood sugar was quite reasonable.  I relegated her to the 'sick corner' of the sofa with the remote and a cup of peppermint tea.  

I proceeded to make the requisite phone calls, and coffee.  Then, ironically, I had to go to the school anyway to drop off dessert for lunch with a visiting author. On the way home I stopped at the convenience store to pick up a low-carb sports drink.  

Arriving home, I had my daughter check her blood sugar again.  Then it occurred to me (belatedly, I know) to check for ketones too.  I dug the blood ketone meter out of the diabetes box.  A quick drop of blood and the result read out.  '1.2.'

"That seems pretty high," I said vaguely. We check ketones during illnesses, but it's been years since she's had any.  I did some quick research. 'Moderate' was the official term I was looking for.  We needed to take action quickly or things would go from bad to worse.  Meanwhile, her blood sugar was down to 120. She needed insulin to help clear the ketones, and therefore she'd need to take in some carbohydrates to balance it out. 

I calculated a generous insulin dose and she managed to get down 15 carbs of ginger ale.  I then provided her with a cheerful travel cup full of the diet sports drink. She sipped as best she could to start washing those ketones out of her system. The combination of insulin and hydration began to work their magic. We were soon out of the woods.

What struck me about this incident was how unprepared I felt for it.  My instinct, when I didn't know what that ketone reading meant, was to time travel back 11 years and dig out the booklet our children's hospital gave us when she was diagnosed. The chart was right where I pictured it, accompanied by lots of helpful advice which helped me deal with the problem.  Yet questions remain.

Should I be relying on 11 year old information or are there newer protocols?  Would it be worthwhile to review sick day plans at our next endo appointment?  Should plans for various emergencies be reviewed every couple of years as a rule?

Hopefully it will be another few years before I need this information again, but I don't plan to wait that long to refresh my memory.

What If?

 This is a story about something that happened last weekend.  It is not advice, medical or otherwise.  Except maybe to be extra-careful when walking on frozen lakes.

'Does your daughter have any medical conditions?'

I mumbled a little.  "Nothing that's relevant here."

'Too young to have much of a medical history, huh?'

'Mmm,' I said with a tight smile.

The EMT continued to treat the facial injury.

We were at a family resort for a girl scout troop overnight.  Our last outdoor stop of the day was to explore the frozen lake.  I saw it happen in super slow-mo from about 30 feet away.  My daughter was walking towards her friends when her feet went out from under her and her face hit the ice. We're unable to reconstruct where her arms went, but they were of no help to her mouth.

She bit deeply into her left outer lower lip. The left side of her mouth was swollen and riddled with abrasions and braces marks inside and out. There was a lot of blood. We took her inside, got ice, washed up her face and rinsed out her mouth.  The bleeding wouldn't subside.  We were told there was an EMT on site.  I decided, particularly being far from home, that it would be smart to have it looked at carefully so I wouldn't wonder later if more should have been done.

My daughter later described our time with the EMT eloquently.  "He had trouble finishing his sentences.  And he kept repeating himself."  He was perfectly kind, and gentle, and competent.  But 20 minutes into his work, he was still cleaning the cut.  He had reassured us that she didn't need stitches and that her teeth seemed fine. He was finally getting out antibiotic ointment and bandages.  Then he asked the question.  "Does your daughter have any medical conditions?"

I looked over at the rest of my daughter's girl scout troop, so patiently and lovingly gathered with the other parents, waiting for her.  I thought about bumper cars, and dinner, and the evening fun to come.

I ran through the diabetes-related possibilities in my head.  I knew I should be honest. But could anything either he or I would gain from the potential conversation be worth the 20 minutes it would take to have it?  I mumbled my answer.

It felt really weird.  As I denied the diabetes, her life flashed before my eyes: the traumatic events of diagnosis, the countless endocrinology visits, the pump and CGM stashed under her winter layers.  What if none of that had happened?  What if this lip injury was one of the most significant medical events of her young life?

Eventually we were walking towards the bumper cars with an adorable stuffed lion her friends chose for her from the gift shop (conveniently located adjacent to where we met up with the EMT) when my coat pocket vibrated and beeped. A glance confirmed the inevitable:  240, double arrows up.  The adrenaline was at work.  Diabetes was, indeed, relevant to this situation just as it is to just about every other one.

But I refuse to let it slow us down.

Helicopter Parenting

I'm one of those parents.

I'm the last one to leave the birthday party and the first one back. If I leave at all. 

If parents are allowed on the field trip, I'm signed up.

I'm on the sidelines of every softball game from pre-game practice 'til the end and I insist on stopping by the bench at least once during the game to check in.

I hunt her down at the town pool to ask her if she's o.k.

She must text me when she starts walking home from school.  If she's not home in less than 20 minutes, I'm headed up the street to look for her.

During school dances, I like to plan an outing with my husband or a friend at a restaurant across the parking lot from the entrance to the gym.

If she's somewhere without me, I'm constantly texting to check in.

I watch her while she sleeps.

People judge those parents.  (Actually, people judge just about every kind of parent but that's a topic for another day.)  'Their kids will never gain any independence.'  'Their kids will be wishy-washy'  'Their kids will have no sense of self.'

For the judgers out there, two things to consider:

First the obvious, based on the theme of this blog.  You may not know why a parent is hanging around the roller skating party or watching their child like a hawk on the museum field trip.  This disease is unpredictable, and when put in unusual situations like the ones I've described, my daughter is very likely to have issues with her blood sugar for which she needs a trained adult's help.  I hover because there's a real and ever-present risk, beyond what you can see, to my child's safety.

Second, the interesting part.  The same words have come up at every teacher conference since preschool. My daughter is described as responsible, self-aware, and self-confident.  How did this happen with me hanging over her for her entire life?  I can't say for sure but I try to strike a balance when I can. When it's safe, I encourage independence.  She walks home from school with a friend and her cell phone.  She's been using a paring knife since she was 8.  She attends sedentary birthday parties with uncomplicated food by herself.

When I feel, for her safety, that I must hover I try to be as invisible as possible.  I don't roller skate with her (to be fair, there's more than one reason for this decision). I stand back while she hangs with her friends on the field trip. I'm at the umbrella table with the best view of the pool, but I'm usually reading my book.  She knows that I'm there to help her with diabetes, not to be incessantly involved in the minutia of her life.

I often wonder if I'd be one of those parents if it weren't for diabetes.  It's impossible, of course, to know. I've been hovering over her since before she could walk.  It will get harder as she gets older, and I'm grateful for today's technology which makes hovering from a distance much easier.  Hopefully I'll continue to be able to strike the balance between being available to help and letting her spread her wings.

Go Bag



Sandy is the first storm for which we've packed a full diabetes 'go bag.' 

There is always a plastic shoe box on my daughter's closet shelf with batteries, three of four vials of strips, some syringes, and a couple of site change sets.  It also has a spare meter and some glucose tabs.  It's our travel box for weekends at Grandma and Grandpa's or our starter kit for vacation packing.  I think of it as what we would grab should we need to evacuate.

Yet as I began to contemplate the possibility of an actual emergency, I realized some things needed to be added to tide us over:

A flashlight

Juice boxes

A big jar of glucose tabs

At least 2 weeks of site change supplies, strips, lancets

Alcohol wipes to sterilize things if we had to

Snacks

I also realized that once the hint of an emergency is on its way, we should get this kit out of the closet and put it somewhere handy.  Last week, we put the plastic box into the ironic 'JDRF Walk To Cure Diabetes' bag, adding the aforementioned items.  We also added our every-day insulin and  long-acting back up insulin, as well as the spare supplies we keep in my purse, my daughter's backpack, and elsewhere around the house. 

Once gas is easier to come by and Target doesn't seem like a far-off land, I'll head over to get a larger container so that this discombobulated bag of diabetes paraphernalia can be organized and water-proof.

Meanwhile, I'm grateful that I was able to unpack a few things from it this morning and return it to its shelf.  

Sandy

It's all a blur.

Today's my first day this week back on the internet, catching up on the non-storm related events of the past week. 

Apparently Halloween happened.  I've seen lots of facebook pictures of friends' kids in cute costumes.

It seems the candidates are still campaigning for an election next week.  There are contingencies for me to vote in a national guard truck of some kind, which could be interesting.

There's also the matter of Diabetes Awareness Month beginning yesterday.  I think last year I posted every weekday in November.   Perhaps that will seem more realistic next week.

Meanwhile, we are happy for home and family.  We're relishing the resumption of all of our utilities.  The fact that we still have half a tank of gas and a running refrigerator with food to prepare puts us miles ahead of half our town and most of our surrounding geography.  We're enjoying unusual amounts of company with neighbors taking us up on our offers of heat and electricity. 

Next week we begin anew. Halloween might be on Monday.  Power will continue to be slowly restored and trees removed from our town.  School, work, and blogging will take on relevance for our family once more.

Meanwhile, we'll celebrate all that we have and seek more ways to help those who have lost so much.  It's my hope that you will do the same.