Wednesday, January 16, 2013

Poking the Beehive

Since the New Year we have been struggling with BGs. Rarely have we seen a number that starts with a 1.  We see BGs in the 200s, 300s and even the very unnerving 400s.  On a couple occasions we have aggressively overcorrected and Ben has gone low.  But for the most part we have been stuck in the 200s.

For the most part, I am unphased by an occasional high number, but BGs over 200, check after check after check, start to rattle me. My brain goes directly from a BG of 258 to envisioning big clumps of glucose floating around my baby's blood vessels and smashing into the back of his eyeballs.  I know, I know, I know, that all seems a little over the top, but this is my baby I am worried about.

Jeff agreed it was time for me to start tweaking Ben's pump settings. We started slow. Our first priority was to get his morning number back in range. I decided to up his 3:00 am to 6:00 am basal rate.  I increased it by the very minimum amount.  Every time I touch any of Ben's pump settings I feel like I am poking a beehive with a stick. Now don't get me wrong, a beehive is a very amazing thing, it's where those amazing little bees make the nectar of the gods, honey. But if you want any of that honey you better play really nice and not piss off the bees.  So, I make a very teeny, tiny adjustment and then run for cover worried that a swarm of angry diabetic bees will attack us. This time there was no swarm and this small adjustment seemed to bring down his morning BG a bit, but not too much, but also not nearly enough.  Not enough for me to stop worrying about Ben's eyeballs. So I kept poking the beehive.

I continued to be patient, making small adjustments each day until last week, until Tuesday when Ben ran out of insulin at school. Ben was requiring more and more insulin. The amount of insulin that would normally last three days was running out in two. Something dramatic had changed in Ben and it was time to make even more dramatic changes to his pump settings.  It was time to throw away the poking stick.

Thursday Ben stayed home from school nursing his broken shoulder (while watching Cartoon Network) and I obsessed about his BGs.  I sent our nurse educator an extensive email detailing Ben's BGs, what changes I had already made to his pump settings, and ended with Ben's broken shoulder story.  I closed with "Pretty please help me."  Because our nurse educator is AWESOME, I received a reply within a few hours.  She sent me detailed instructions to change pretty much everything. I quickly made all the changes.

Friday morning I was hoping (expecting) to start seeing BGs in the 100s. Instead I continued to see 200s and even 300s.  I am now on the verge, on the verge of having a Shirley MacLaine from Terms of Endearment sized meltdown.  Here is an example of my mental state in case you not familiar with Shirley MacLaine or the movie.



Then Saturday evening after another day of high numbers Ben asked me if he could have an ice cream.  I tell him we need to check his BG first.  He brings me his test kit and we check and then 312 flashes on his monitor.

I respond with a very dramatic, "UGH! Seriously?!"

Ben drops his head and says, "I am sorry."

Startled, I ask, "What are you sorry for?"

Ben responds, "I am sorry for the 312."

I start to realize what I had done.

I assure Ben, "You have nothing to be sorry for. The 312 is NOT your fault.  It's NOT your fault that you have Diabetes. So it can NOT be your fault that you have a high or low blood sugar ... Do you understand?"

Ben replies, "I think so ... But I wish you had told me that before."

Now I am sorry. Sorry, I had freaked out and sorry I had made Ben feel responsible. It was now my turn to apologize.

"Ben, I am sorry I didn't tell you that before. It's not your fault! Do you forgive me?"

Ben smiles and says, "Yes."

I really blew this time.  I let all my anxiety overwhelm my normally rational self.  We have been living with T1 now for a few years. I know better than this. I know that it is not healthy, mentally healthy, to become emotional and over react to BG numbers.  But at this point I couldn't stop worrying about what horrible damage all that extra glucose has been doing to Ben.  Jeff warned me I needed to calm down. Ben's brothers warned me too. But not until I had this conversation with Ben did I realize what was causing the real IMMEDIATE damage. It wasn't all that extra glucose, it was ME.

Today, we still do not have Ben's BGs down where I would like them to be.  I am still making adjustments to Ben's pump settings. I am back to poking the beehive. But I am not freaking out. 
That is not completely true ... I am quietly freaking out ... but only on the inside now.

Saturday, January 12, 2013

Then comes Wednesday ...

Please forgive me.  Had to continue my long epic "poem".  Our journey this week was still not over.

Then comes Wednesday
Begins just like Tuesday
With super dad packing up boys
And driving them all to school
Mom slowly drags herself
Out of bed
But today I work from home

Today is Ben’s debut
His 4th grade school play
Will skip out this afternoon
Watch my baby shine on stage
Boys attend “all boys” school
Like Shakespearean actors boys play females
Ben is so brave
Took the only female role
Playing the sassy girlfriend

Shuffle downstairs in my pjs
Pour big, big cup of coffee
Cream, NO SUGAR
Sit down at desk
Start another busy, busy day
11:00 am conference call
Chatting with folks across the pond

Beep, beep, beep
See Jeff is calling
Ignore
Still working
Will call back later

Beep, beep, beep
Seriously, Jeff?
I will call you back
Ignore
Still working

Beep, beep, beep
What the heck?
Worry now
Bad mommy feeling
Rudely interrupt conference call
Got to go
That was so unprofessional

Finally click over
Hello, what’s going on?
Please meet me at Children’s Hospital
Ben fell at recess
Needs x-rays
Ben’s not crying
Just seems sad
Will be there in 30 minutes

Change out of pjs
Pour one more coffee
To go this time
Scrape ice off car
Still not too worried
Seen inside ER before
At least no ambulance this time

Meet Jeff at hospital door
X-ray already done
Waiting for results
Ben is sad
Does it hurt?
Not too much
Why so sad?
Going to miss school play

Nurse calls Ben’s name
Results are in
Small crack near shoulder
Need to see ortho specialist
Definitely miss play
Now Ben super sad

Jeff going back to school
Ben and I need to drive to ortho office
Jeff gently kisses Ben good-bye
Wait!
Ben has diabetes
Almost forgot that part!
Jeff gives me
Test kit
Glucose tabs
And protein bar
Ben missed lunch

Driving to ortho
How far mom?
Not very far
Mom, my arm hurts
I bet it does
How did it happen?
Tripped on basketball in gym
Ben declares
No more basketball
Only hockey from now on!

Park
Walk slowly to front door
Register
Handed clipboard
Fill out forms
Any medical conditions?
Want to write
DAMN Diabetes
But don’t
Write Type 1 Diabetes
Taking any medications?
Insulin
Frequency?
This time DO write
Forever and ever

Second time today
Nurse calls Ben’s name
Follow her to examine room
Answer same questions from form
This time omit
Snarky answers

Nurse leaves
Doctor enters
There is a break
But can not cast
Too close to shoulder
Wear sling instead
For 4 to 6 weeks
Pain should stop in 2 weeks
Head explodes
2 weeks of pain?!
Here is a prescription for
Tylenol with Codeine
To help sleep
Come back in 4 weeks
No sports until then
Here is your gym note
That’s it
Doctor leaves

Wow
Ben you ok?
I am ok
Doctor said 2 weeks and pain should go away
Ben pauses
Looks at me
Smiles ...
“That’s not so long Mom
At least this Doctor didn’t say
The rest of my life!”

Ha!
You are so right
You are so wise
2 weeks really isn’t that long
This time
It’s not
Forever and ever!

We collect our paperwork
And our CD with the x-rays
Leave
Stopping at registration
To make a return appointment
Is Feb 13th a good day?
As good a day as any

Before we leave office
Sit and check BG
Carefully prick finger
257
Correct
And wonder
How will a broken limb affect Ben’s BG?
Suppose we will soon find out

We slowly and gently walk back to car
Quick steps
Heavy steps
Hurt
I buckle Ben in
Just like when he really was my baby

On the way home
Decide to stop at school
Pickup backpack
Left behind

Walking across campus
Run into buddy
4th grade play just ended
Ms Drama Teacher filled in for Ben
Buddy chuckles
Says Ms Drama Teacher
Wasn’t so funny
Not as funny as Ben
Ben chuckles too

Head to homeroom
Stopped many, many more times
“Ben what happened?”
“Ben you ok?”
Quietly Ben responds
Reassuring everyone
“It’s broke … but I am ok”

Finally make it
More warm greetings
From classmates
From Mr 4th Grade Teacher
Ben struggles but is able
To write down his assignments
Read Chapter 4 of Hatchet
Study for spelling test tomorrow
Pack up books, coat, and hat
Quietly wave good-bye

In the hall now
Ask Ben
Should we check with Mr Math teacher?
Must have math homework too
Do we have to?
You know,
I hate math!

I pause
I look at Ben
So brave
So strong
And so very, very wise

No Ben
No we don’t have to
There will be
No math homework tonight!

Wednesday, January 9, 2013

Tuesday begins ...

Tuesday begins
With super dad packing up boys
Driving them all to school
Mom slowly drags herself
Out of bed
And off to work I go

Busy, busy day in office
But find 5 minutes
To call grandparents
Ask to babysit
Tomorrow night
Dad and I want to see “Les Mis”
Yes?
Hooray!  Come by around 5:00
 
Busy, busy day continues
It’s already 4:00?!
Quickly pack up
Need to pick up boys at school

Racing to elevator
Cellphone vibrates in pocket
Hmmm, school nurse
Can’t be good news
What?! What?!
Did I just hear that?
Ben has no insulin left in his pump
Nothing at all?  Zero?
Nothing at all
By the way, Ben is over 400
I’ll be there in 20 minutes

Push elevator button 2 more times
Useless
Run downstairs instead
Shuffle feet quickly
Across icy parking lot
Slide straight into car door
BANG!  OUCH!
 
Now drive off wondering
How did that happened?
Where did all Ben’s insulin go?
Coughing, coughing for days
Can’t keep blood sugars down
Needed more and more insulin
Never used so much insulin before

Pull into school parking lot
Less icy here
Must have used lots of salt
Safely arrive in nurse’s office
Without another BANG

Nurse hands me brown paper bag
Pull out reservoir
Pull out tubing
Pull out IV prep
Chat about diabetes camp
Prime pump
Pinch cheeks
Stab
OUCH!
Sorry!

Nurse politely suggests
Recheck Ben
104 now
What?! What?!
Lowest number in days
OK boys, let’s get home

Safely make it back to car, again
Drive home
Boys chatting
Tomorrow is Ben’s first play
Tomorrow Abu and Grampy coming to sit
Dad and I get to see “Les Mis”

Finally home
Boys blanket kitchen table with backpacks and books
Please make room for a plate and fork
Garren with headphones
Ben lying down on bench
Ben crying about homework
“I hate math!”

Open frig
Leftover rice
Scramble eggs
Frozen peas
Worry Ben needs to eat ASAP
Was 400 then 100 … too fast

As I nuke peas
Watch “Les Mis” concert on iPad
Sing
Certain I sound as great as Fontine
Ben whines
Maybe not

Assemble dinner plates
Suggest Ben check BG now
Finish crying about horrible division worksheet
Check
37 flashes on screen
Mom, I am Patrice Bergeron
Places face in folded hands
Sobs
Eats 3 glucose tabs
Set kitchen timer for 15 minutes
And put dinner plates back on kitchen counter

Waiting
Listening
iPad still playing
“Do you hear the people sing?
Singing the songs of angry men”
With face buried in his arms
Ben pounds the table
Then declares
“I wish I could drag diabetes out of my body
And then with a with a big fat knife stab it to death”
Startled
WOW!
Violent
Then reconsider
I wish that too

Wait some more
Ben continues quietly pound the table with fist
Need to distract
“You know who would appreciate your murderous diabetes ways?”
Nick Jonas
He is singing right now
Bring iPad over
We wonder if he is hiding a pump under his fancy costume
We wonder if he checked his BG before he got on stage
We both decide 150 would be a good number
We watch him sing
Eponine is dying
Ben says, “Sooooo sad … but so beautiful.”

Buzz ... Buzz ... Buzz
Kitchen alarm
Time to recheck
115
Yeah!
Time to eat

Place cold dinner plates on kitchen table
Garren finally takes headphones off
Asks what we are listening to
Ben digs into his plate ravenously
Walk to sink
Start scrubbing pans
Listen to more songs about french revolution
Remember Ben’s comment
So sad but so beautiful
He is exactly right
Just like Nick Jonas
So sad but so beautiful
Just like my baby, Ben
 
Lost in thought
Suddenly, more fist pounding on table
Startled
I turn
“Mom!  I hate math!”

 

If you made it this far … thanks for reading!   My very first “poem” (note the quotes) was inspired by Sharon Creech’s book, Love that Dog.  Ms. Creech please  forgive me.  I know it’s horrible … but it sure was fun to write.