The Sweet Spot

Phew … Sick week is over.  I sit here at my kitchen table sipping my bulletproof coffee (that’s for all the Whole 30 fans) after giving Ben his third dose of antibiotics and finally relax.  The week started off well.  After our endo appointment last week we made a few adjustments to Ben’s pump settings and … Voila! … We were seeing the best BG numbers EVER, no numbers over 150, without even a single 275 or 321 sneaking in.  I even began to think … Maybe we have this?!  Maybe out next A1c check will come with a few gold stars and a high-five for good measure.  We had hit our T1 sweet spot!

Then comes Wednesday, hump day, apparently, we had reached our peak and now it was time for the downward slide, fizzle, putter, crash.  The day started simply, everyone waking up and getting ready for work and school.  Because I am the slowest waker-upper in the house I was still in my room when Ben came knocking on my door.  He immediately, laid down on my bed and whines that he couldn’t eat breakfast because his tummy hurt.  I responded with a very unsympathetic, “Seriously?!”  He then begged me to take him to the doctor.  Since I do have heart (he is my baby) I told him to lie down and I would call the doctor’s office.  But before I did so, I had to ask, “What was your morning BG?”  “75”

Now 75 on Monday and Tuesday would have been great, but not today.  Being low and having a belly ache is not a great combination.  No longer I am I hoping for our sweet numbers from Monday.  Now I would love to see a 175 or even 200.  On the way to the doctor’s office we check again … 82.  Ack!  We set a temp basal reduction (and I silently pray.)

During the doctor’s visit she asks lots of question about where the stomach pain is and what it feels like.  She asks him to sit on the table.  She checks his temperature (which is fine), she swabs his throat (quick strep test comes back negative) and checks his ears.  As she is peering in his ears she asks, “How is Ben’s diabetes?  Is it under control?”  Ugh.  My very, very most HATED question.  Usually, I answer with some snarky response, but not this time.  This time I say, “This week we hit the sweet spot.  We had the best numbers ever.  Not one number over 150.”  And yes, I was gushing with pride.  The doctor then says, “OK.  His ears look fine.”  What?!  Not a, Wow, you’re the most awesome T1 mother in the whole wide world? … Nope … instead she tells us she didn’t find anything specifically wrong, we should treat his symptoms and then sent us on our way.

On the way home we check Ben’s BG again … 78.  We lower his temp basal some more. The rest of the day goes the same way, unpleasant visits to the bathroom, blood sugar check that never hit 100, and more temp basal reductions.  Eventually, we make it through the day.  BGs are Ok and no visits to the emergency room.

Thursday morning starts off the same as Wednesday.  I am slow to get out of bed and Ben knocks on the door.  He still doesn’t feel well.  Another day home with me, except this day his BGs are sky high, 300s, 200s, never a 100.  Together, we make it through another sick day without a visit to the ER and Ben is finally eating again.  His high BG numbers continue through the night and into Friday morning.  But, Friday we decide it’s time to go back to school (and I need to get back to work.)  Finally, Ben is off to school and I am back working … until the doctor’s office calls.  Ben has strep.  He needs to come home from school and start taking his antibiotics.

And now today, Ben woke up with another high … 176.  Sadly, I think the BG sweet spot we had hit earlier this week is now gone.  We are back on the diabetes rollercoaster.  There is still hope that once Ben is 100% better we can find our way back.  But I have my doubts, because that’s not what diabetes is.  Diabetes is up and down and sideways.  But before I say, “adios” to our sweet spot, I want to revisit Monday’s numbers again.  Here are Ben’s actual BG numbers from Monday:

 

 

Ahhh … now that was sweet!

Sunday

BD (before diabetes) we were a typical family living in a typical American suburb.  We were active volunteers in our local school, church and pretty much every sports club in town.  We were very, very busy but we always made time for church on Sunday mornings.  I was certain we were doing everything “right”.   And our world felt just right.

Then came diabetes.  And it seemed as if the whole world had changed.  Before the world seemed like a place full of love and now all I saw was sadness and pain.  Now to be clear, I realize I wasn’t the one with the broken pancreas, but I am a mom and my heart was broken.  (And I mean shattered into a million little pieces.)

In this new world, our focus was diabetes, diabetes, diabetes.  We had to learn how to best take care of our son.   It was time to circle the wagons and focus on our family.  There was no longer time for volunteer work.  And Sunday mornings became a time to steal some extra sleep. (As any T1 family knows, taking care of diabetes is exhausting.)  What was left of my broken heart just wasn’t moved to go to church.  And slowly, over time our family just stopped attending Sunday mass.

It is now 4 years AD (after diabetes).  And we have adjusted to our “new normal.”  (I always hated that phrase.)  Slowly, my broken heart is mending and I think it’s leading me back to church.  So this past Sunday, I dragged myself and the boys out of bed and went to Sunday mass.  It was time to give it another try.  

The gospel reading for the week (yes, I am Catholic) was the story of the Prodigal Son.  When the priest started reading I thought … Hey, this is story of a man who left his family and then returned begging for forgiveness, maybe this is a sign, and maybe God is speaking to me.  So I sat up straight and forced myself to listen.  But then the priest read the story of the young son who asked his father for his inheritance and then ran off and squandered it on partying and extravagant living.  Wait that’s not me!  I haven’t spent the last 4 years partying.  My life has been quite the opposite. That sounds like fun but that’s not me.  And sadly I thought … this is not a sign.

But then, that’s not the end of the story.  After the son begs for forgiveness the father decides to throw a party.  Then enters the bitter older brother who complains he has worked hard and remained loyal and done everything “right.”  He then asks his father, “What about me?”  Ahhh, now this is sounding a little more like me.  I thought I was doing everything “right” too.  And maybe my broken heart was a little bitter too.  And maybe I too want to ask, “What the heck is going on here?”  Alright … now I am paying attention again.  How does this story end?  What does the bitter brother decide to do?

But wait … that is the end!?  We never learn if the bitter brother goes to the party?  I suppose the real question is what am I going to do?  Am I going to join the party?  I did, at least, open the door and came in ...

The truth is we are no longer the typical family.  Our world has changed (some it for the better).  And in our new world … which is filled with countless sleepless nights filled with too many highs and lows … sometimes sleeping in on a Sunday morning might be the “right” thing to do.  Living with diabetes has taught us a lot.  And one thing we have learned is … you have to take each day one at a time.  So for now, I will take each Sunday one at time.   And I suppose I will just follow my heart. 

The Conversation ... the school version

This year before the first day of school I again met with Ben’s homeroom teacher.  I was time for yet another “conversation.”  However, this year the conversation was very different from previous ones.  This year I brought NO handouts.  There were no diabetes 101 lectures.  I even, flat out said, “If you are interested in learning the details of Type 1 diabetes I would be happy to send her some literature and answer any questions she may have, but I did not bring any here today.”

I continued … paraphrasing of course … because there were a lot more stuttering and long pauses … I am not always the most eloquent speaker …

“Today I want to talk about Ben.  Here at your school you emphasize teaching the ‘whole boy,’ focusing on more than just academics.  Now for Ben … his ‘whole’ is just slightly bigger than the average student.  Ben’s ‘whole’ includes Type 1 diabetes.

“We have already walked through his care plan with the school nurse.  Ben is aware of what he needs to do throughout the school day.  What I ask of you is to understand that no matter what, sticking to this plan and this schedule will be his number 1 priority.  Ben, so far, has been very responsible and knows what he needs to do.  My hope is this routine (which we have followed the past 4 years) will become a habit, will become muscle memory.  So when he becomes a teenager and we lose him … and he starts the eye rolling and hating every word I say … if he fights us and fights his diabetes care … Ben will at least, in the back of his mind, know what he should be doing.

“You know the saying, ‘your health comes first’ … for Ben that will always be true.  Nothing he learns at school will be more important … no reading, arithmetic, or history lesson will really matter if Ben doesn’t live a long and healthy life.  And whether that happens is really up to Ben.  We just need to help him get there and support him along the way.”

Ben’s teacher was very sweet and whole-heartily agreed.  She asked a couple questions, about low blood sugars.  I explained because of Ben’s fairly calm demeanor it is very hard to see any signs of a low blood sugar.  I further explained if he sticks to his scheduled blood sugar checks most impending lows will be detected early … but if he does tell you he feels low, please give him a glucose tab and walk him to the nurse.   I then asked, “Please do not let him walk to the nurse alone.”
We then went through Ben’s schedule and joked about the evils of Diet Coke.

I then thanked her for time.

I hope this year I was able to stress the importance of sticking to Ben’s care plan while at the same time not freaking out the teacher.  What I don’t want is for Ben to always be “that boy”, the boy the teachers hope they don’t get assigned to their class.

I hope it worked … fingers crossed … only time will tell … and hopefully Ben has lots, and lots, and lots of time. 

Why is it so hard?

Back in January of this year, our family was invited over to a friend's house for a dinner party.  Early in the evening Jeff, Ben and I had to take a time out from the festivities for a “diabetes moment.”  At the time Ben was either too high or too low (I can't remember which) and we huddled in the corner of the kitchen deciding what needed to be done.  Eventually, when we returned to the party one of my friends asked me, "Can you explain to me again, why is it so hard to manage Ben's blood sugar?"

I did my best to answer the question ... but I knew I had failed.  I wanted to explain everything clearly, but my red wine muddled brain quickly became frustrated.  In the end, I said something silly like, "It's really complicated."

The following day I continued to replay this conversation in my head desperately trying to come up with a better response.

I think part of the problem is some parents, who luckily don’t live with T1, imagine insulin dosing instructions should look similar to the chart found on the side of a Children’s Tylenol bottle.

 

Instead of giving a child who weighs 70 lbs 2 ½ teaspoons of Tylenol, the chart on an insulin bottle would say something like for 50 carbs eaten give 2 ½ units of insulin.  But insulin bottles don’t come with a simple chart.  The dosage calculation is more complicated.

 

I decided what I needed for the next party was a pocket card I could pull out with a bolus calculation.  (That would be a pretty cool party trick.)  It would include all the variables that we consider when calculating Ben’s insulin dose.  In my head I envisioned the finished product looking something like one of the chalk board formulas from “Good Will Hunting.”

 

 

I thought that sounded like a fun little exercise. (I am a total nerd.) So I drew up this bolus calculation …

 

 

But I was unsatisified.

 

What I wanted to show was all the variables that can affect this calculation.  I also wanted to show how each of the variables are not quite that certain.  I couldn’t figure out how to incorporate all that variability into one calculation.

 

When you look at the chart on the Tylenol bottle the only thing you need to know is how much your child weighs, which isn’t a difficult thing to figure out.  All you have to do is stand on a scale.  But to calculate an insulin dose you need to know how many carbs are in a meal, the insulin to carb ratio, current blood sugar, target blood sugar, sensitivity factor, and insulin on board.  And the trickiest part is, other than target blood sugar, there is no way to know for certain what any of these numbers are. 

 

You can read the nutrition label to find the number of carbs, for example on a box of crackers, but that number is not absolute.  The carbs listed on a nutrition label can be off by +/- 20%. 

 

You can get your current blood sugar by using a glucose meter.  But again this is not an absolute number!  This number again can be off by +/- 20%. 

 

Then there is the insulin to carb ratio and sensitivity factor which your doctor helps figure out.  But again these numbers are not absolute!  These numbers vary during the day, change constantly (especially for a growing child) and in the end are only educated guesses. 

 

Trying to come up with this calculation proved to be less fun and more frustrating than I expected. I am certain even Good Will Hunting couldn’t have done much better. So in the end I gave up. There would be no fun party card tricks. I saved my formula … and then forgot about it. 

 

Until this week ... After reading fellow bloggers posts about the Strip Safely Campaign.  The basic complaint is that blood glucose test strips are not all that accurate and there is no post-market inspection of these strips. This campaign reminded me how difficult it is to calculate a proper insulin dose and how frustrating it was for me to even attempt to explain why. 

 

I hope (and pray) the FDA listens and figures out a way to ensure the accuracy of blood glucose test strips.  Because wouldn’t it be nice to have at least one of these variables be more certain.  And wouldn’t it be really nice if we had to deal with less “diabetes moments.”  But wouldn’t it be really, really nice if it wasn’t quite so hard to manage Ben’s blood sugar!