Into Your Darkest Hour

Holiday break is over.  Drago went back to school this morning.  He was actually excited to return.  So back to the midnight and 3am checks and up at 6am to get Drago up and ready and take him to school.  The one saving grace right now is that I am part time at my job so I still have a little time, but I sure will miss sleeping "in" until 7:30/8am.  Only 6 months until I can do that again.  😄. The Mombie might need to up her coffee intake.

Sugar Bear was high all day yesterday and he has started the same today.  Lucy, our dog, has taken to watching over him.  High days are challenging.  He doesn't feel good and he is crabby.  Sometimes extra sleep helps.  I'm just hoping he's not getting sick.  We'll all keep a watchful eye.

So my ocd took over and I highlighted every entry in the log.  It was fascinating.  One thing I ended up doing was counting how many of the midnight and 3am checks (not the 4 or 6 am) resulted in needing a shot or carbs.  Drum roll please.....the total number of treatment nights were 88!  That is almost 3 months.  So I got curious.  How many of those were only the 3am checks?  18.  A little over two weeks where the dead of night had us giving juice 13 times and a shot 5 times.  I would really like a CGM.  It won't stop the need for finger pricks, but it might allow me to rest a little better with seeing how the blood glucose is trending.  If I could just convince Sugar Bear.  So we'll keep checking.  I'll keep stocking juice in the kit for just in case.  And I'll try not to miss too many of those 3am checks.  And I'll keep highlighting and looking for trends.  So that playlist I talked about yesterday, the first song on the list was one of my adds.  I added it for a number of reasons, but mainly because of these lyrics:


I'll stand by you
I'll stand by you
Won't let nobody hurt you
I'll stand by you
Take me in, into your darkest hour
And I'll never desert you
I'll stand by you


I know he'll have hurts, he already does, but it's that darkest hour and never deserting him that resonates with me.  I know what the dark 3am low does.  I'll always stand by him.

The Mix

I picked up some highlighters to make looking at trends in Sugar Bear's logs easier.  We're doing green for exactly 100, yellow for in range, pink for out of range, orange for over 300s, and blue for lows.  It makes it so much simpler to glance at a five day page of numbers and automatically see what is going on.  I got a little crazy and have highlighted back to June so far.  But it gives me some semblance of control.

We have him signed up and starting swim lessons at the Y next Saturday.  Not New Year's resolutions, just some healthy changes we are trying.  It feels good.  Our goal is to try for high 6s on Sugar Bear's A1c, but more importantly to have fewer highs and lows.  And to slow the weight gain.  It's a balance.  We'll work on it.  He really wants to get more "right on the nose" 100s.  Last year he had at least one 100 each month except for three months.  Some months he got more than one.  We celebrate each 100 with a dollar.  It's incentive.  It's rewarding.  It's positive.  It's fun.

Not much in this disease is fun.  So we try to find things to make it fun.  Music is another fun thing we do.  We have a Sugar Bear playlist that each of us has contributed to. We call it Sugar Bear T1D.  So far we have these songs on it:
I'll Stand By You 1994 by The Pretenders
Candy by The Presidents of the United States
Bleeding in Holland by Nil Lara
Don't Let it Bring You Down by Neil Young
Burn it Down by Linkin Park
Waiting For the Miracle by Leonard Cohen
Hold On Hope by Guided By Voices
Born To Break by Eric Harvey
Anthem Live by Leonard Cohen
Gods Gonna Cut You Down by Johnny Cash
Pour Some Sugar on Me by Def Leppard
Like Humans Do by David Byrne
Big Shot by Billy Joel
Let in the Sun by Bill Fox
Merry Go Round by Antje Duvekot
Hurt by Johnny Cash
It's All Good by Bret Michaels
The Game Over Tinies by Brentalfloss
Chances by Athlete
Sweet Emotion by Aerosmith
I Want Candy by Bow Wow Wow
Uncle John's Band by Grateful Dead
Enchanted by A Minecraft Music Video parody
Schism by Tool
Take Me To Church by Hozier
So Unfair by Korn

Each of these were added for different reasons and by different people.  Any suggestions are welcome but you have to have a reason why it would work for Type 1 or our little family.  You can see we are pretty eclectic in our musical tastes.  That's what happens when you have a family.  We mix.  And in the mix is fun.

The 3am Mombie

For 367 days we've been checking Sugar Bear's blood glucose (bs).  We've been checking before breakfast, lunch, afternoon snack, dinner, bedtime snack, midnight and 3am.  We've never missed a daytime check.  Out of those 367 days we have missed 29 3am checks.  On some of those we checked at 4:30am or 6am but most we didn't check until 7 or 8am when we woke up.  That panic and guilt when you miss the 3am check is like a stone in the belly.  You immediately visibly check your child to make sure they are breathing.  Some in the diabetes community skip that middle of the night check altogether.  We (with our endo's advise)  just can't do that.  We can't imagine going 8 hours regularly without checking.  We don't do that during the day and daytime is easier to make sure he's okay because he is awake.  Those middle of the night checks have caught lows of 50s and highs in the 300s.  We've force fed juice and peanut butter crackers for lows and given an injection of insulin praying he doesn't jerk or rollover while we were doing it all while holding a little flashlight in my mouth.  I received a fantastic and practical gift for Christmas.  It's something that has already made those middle of the night checks and shots so much easier.  It may not make me pretty but it works and I love it!  (Please ignore the messy bed head and the dark circles and sleepy eyes--that is my normal 3am Mombie look.)

Happy New Year

More Timehop story.

It doesn't tell the whole story.  But it does do a pretty good job of giving an impression, a picture.  It's why I am so passionate about working towards a cure.  It's why I'm adament there needs to be more education.  I've grown a lot and learned so very much in a year.  This year for New Year's Eve found me back at the hospital to deliver goodies, to make better memories.  Twenty kids got a bag with a sparkly hat, a light up ring, a noisemaker, and a plastic wineglass.  We had the same, so maybe, just maybe there were a few less tears at the hospital.  I know we had just smiles.

Timehop

A new year!  2015. What a difference a year makes.  Last year at the end of December/beginning of January we had a very sick little boy and a new disease.  I was so overwhelmed, and that is an understatement.  The app Timehop gave me a glimpse into how I was feeling.

First Diaversary

I don't know whether to dance and sing and scream for joy or bury my head in my blankets and bawl uncontrollably.  It's been a year today.  This evening marks the day I heard the words "Your son has Type 1 diabetes and is in severe DKA and we need to move him to the PICU."   His breathing was so fast, like he'd been running a marathon and just finished.  His face was ashen and his lips had a blue tint to them.  He had dark circles under his eyes.  And his hands and feet were the coldest things I'd ever held.  He was lifeless.  I was so scared.  Today he is alive.  A year later and he survived.  In another country or 50 years ago or had I not taken him in when I did there would have been no hope.  I hold onto that hope with two hands and a whiteknuckled grip.  I don't want to think of what could have, what might have happened.  He's here.  I'm grateful.  I'm grateful for that ER doctor.  She was an angel.  It was our second trip to the ER.  My Mommy instincts were screaming at me that something wasn't right with the stomach bug diagnosis we had in the morning, in the first trip to the ER.  They missed it.  They misdiagnosed him and we almost lost him. 

First trip to the ER.  Stomach bug diagnosis.

This time of year has always been a time to reflect, to look back.  It's so difficult to do that today.  We've changed so much this year.  Now there is so much planning for meals and outings and just life in general.  It was so overwhelming at first. It's still overwhelming. It's like always having a newborn. The disease hasn't changed.  We have.   Type 1 is the only disease I can think of where you are given the basics and sent home to care for it essentially on your own.  Insulin can be a deadly weapon.  It can give life but it can kill too. But the other option is not even on the radar.  There is no other treatment.  No amount of diet change, exercise, or any other "cure" bandied about will change a diagnosis of Type 1, he'll always need a source of insulin since his body doesn't have it anymore.  Type 1 is autoimmune.  It is a disease where his own body attacks the cells in the pancreas that make insulin and kill them off.  It sucks, but with artificial insulin injected into his body 4 or more times a day he gets to live.  I'll take that.

We've made misstakes.  We've given too much insulin where he then needed to eat more carbs.  We've not given enough insulin and then had to correct highs later.  We've forgotten to take the kit in the car with us.  We've forgotten to pick up more insulin at the pharmacy in time for breakfast.  He has snuck treats without telling us or us noticing until he was having highs all day.  Misstakes happen.  Luckily these misstakes were caught and there weren't any immediately noticeable issues.  But with every high I worry about longterm effects to his body.  We try and avoid misstakes, but we are human. 

 Christmas was wonderful this year.  Quiet, uneventful. Sugar Bear's diagnosis and stay in the hospital colored last Christmas with a broad stroke.  It made it the last "normal" holiday.  I remember the boys eating their candy from their stockings before breakfast.  I remember the laughter and happiness.  I remember the ease.  I remember the normalcy.  I remember the freedom.

2014






What a difference a year makes.

2013
















So I'll spend my day in reflection and gratitude.    We are stronger because of our year.  We are more prepared.  We are healthier.  We are more aware.  We might not have the same ease or freedom and there is pain involved, but we got the best gift in 2013 when we got to keep him. I'll take that.  I have my baby. 

The Sibling

We have an older son, a teenager.  He is 14 going on 30.  He was 13 when his brother was diagnosed.  He has always been a fairly responsible, cautious kid.  He's kind and clever.  When Sugar Bear spent that Friday into Saturday throwing up our oldest was a big help.  When Sugar Bear was non-responsive and breathing like he'd run a marathon it was the teenager who helped me quickly get a few things together as I carried his brother out to the car.  While I was in the ER right after being told it was Type 1 and calling my husband it was my older son who was the comfort. He's had a lot to take in in his short 14 years.  A lot of medical issues and stress for a young man.  His Dad is disabled so a lot of responsibility falls to him.  I talk a lot about Sugar Bear and his diagnosis and his journey, but today I wanted to take a look at the non-diabetic sibling.  The one who learned as much at the hospital.  The one who has given his brother a few shots and tested his brother's blood sugar.  The one that allows people to feel comfortable watching Sugar Bear because his brother is there with him.  The one that is phobic when it comes to needles and turns green at the sight of blood.  I want to talk about him because he is important and I don't know what I would do without him.

Before August of 2013 we had homeschooled both the boys.  Drago (the teenager) had tried to get into a school in 2012 but wasn't picked but he was picked for 2013. So in August of that year he started his first brick and mortar experience in 8th grade.  It was a big transition.  He has some fine motor skill issues so writing and writing a lot was a struggle.  He needed a lot of attention as a confidence booster that he could do this.  We were focused on him.  He went to his first dance.  He made new friends.  When Sugar Bear started showing symptoms that we now know were type 1 we easily were able to rationalize them away.  The bed-wetting must be from his anxiousness of not having his brother around as much.  His irritability might be from the same thing.  The weight loss was a growth spurt with him getting back to his earlier body size.  His hunger was just a growing boy.  And it soon became the holidays with all that entails.  The focus stayed on Drago.  Then that horrible weekend after Christmas and everything turned upside down.  The focus became Sugar Bear and Type 1 diabetes. 

Drago visited the hospital, the first time while Sugar Bear was in the PICU and not responsive.  Drago didn't talk about it.  He seemed to take things in stride.  When Sugar Bear was moved to a regular wing, Drago came for the education.  My needle phobic 13 year old even allowed himself a saline shot to know how to do it.  He might have enjoyed giving me my shot a little too much, but he did it.  We all did.  When the three of us (hubby, myself, and Drago) took the test that would allow us to take Sugar Bear home, Drago did the best.  At the hospital we were told that Drago had a slightly higher risk of developing Type 1 since he now had a sibling with it.

 

We came home.  We worried. We cried.  We stressed.  We changed.  All the while, Drago went back to school not really having had a Christmas Break.  I let the school know what had happened just in case my stoic teenager started having issues.  He didn't.  He knew the focus was on Sugar Bear.  Sometimes things would slip that he felt like Sugar Bear got "better" treatment.  Some resentment on the new snacks in the house that were for Sugar Bear also popped up.  But overall, Drago seemed the most adjusted of all of us.  He got a concussion in school in gym class in the Spring.  He started having headaches and missed a lot of school.  It was challenging for him.  I worried.  I stressed more.  He finished out the school year with straight A's.  No easy feat in normal circumstances.  He did the JDRF walk in June with us.  He proudly wore his bother's shirt.  No complaints.  He rolled with the punches.  He got to have a little break when he went to camp the end of June beginning of July for a week.  But then he came home to find out his brother had had two seizures.  Back to our reality.  Back to stoicism.  During all this time I tried to get the TrialNet done with him.  But because of some local snafus it never happened.  So I would periodically check Drago's blood sugar.  He hated it.  It was always normal.  In July, we lost a good friend that Drago adored.  We went to a funeral.  We went to a family reunion.  He stayed stoic.  August school started back up, and it was back to the grind for him.

And here we are, holiday season again.  Drago is 14.  He always seems hungry and thirsty.  He gets irritable easy.  All these can be rationalized as normal teenage stuff.  But then December 10th, my 14 year old wet the bed.  I freaked.  I checked his fasting blood sugar.  132.  I called Sugar Bear's endo.  They wanted Drago to come in for labs right away.  My needle phobic, stoic teenager lost it.  It was almost impossible to get him to go.  But he did.  He is amazing.  I held his hand while they drew the vials, the whole time looking into his beautiful brown eyes and talking to him about the things he loves, mainly Math and Physics and video games.  But I'd seen past the veneer that day.  He was a scared little boy in a young man's body.  I held him while he bawled.  We got the results later that afternoon.  All the lab work came back fine but we were still waiting on the antibodies results.  In the meantime Drago needed to test his blood glucose 2 hrs after eating and in the morning when he first wakes up through the weekend.  Sugar Bear had a few things to say privately to me like "Is it bad that I really hope he doesn't have it but I kinda want him to know what it feels like even for just a little bit?"  and "Mom, I know how to do my shots and testing so you can focus on Drago right now."  I cried my eyes out.  Please, please, please don't let my stoic teenager have to deal with this. Drago took to the blood glucose testing amazingly well.  I held him, my child that is as big as a man, while he cried with worry.  You see, I forgot that he worries about his brother.  I forgot that he worries he might end up with Type 1 too.  I forgot that he is grown enough to stress about these things and still make it look like nothing is wrong.  Stoic.  Brave.  Courageous.  I have two very amazing boys.  I love them so very much.

The antibodies tests came back all negative!  For now.  The worry is always there, but the stress of it isn't right now. Christmas break starts today when Drago gets home from school.  Maybe we can enjoy it this year.