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.   

Let it Go

Almost two months without blogging.  I've missed it but just haven't been able to put into words all the feelings still churning inside me.  Nothing "major" has happened.

Halloween and our annual Halloween party both went fantastic.  Sugar Bear had a blast.

November was Diabetes Awareness Month and I spent every day multiple times a day posting on my facebook wall facts and info hoping that maybe I'll help just one person, or maybe help educate someone a little on what we go through.  I know I reached a few and for that I am grateful.
 

Thanksgiving was wonderful.  For the first time in years I didn't have to work.  I have a new job as of October 10th.  Their Grand Opening was the 13th and the evening before was a VIP just come and check us out night.  We went and it was crazy and crowded and fun.  Sugar Bear even did his shot in the moving vehicle in the parking lot because we couldn't find a place to park.   And they are closed on Thanksgiving.  It was fantastic.  Sugar Bear told us at dinner on Thanksgiving that he was thankful for a parallel universe where he doesn't have diabetes.  I'm thankful to have him.  I don't like to think of parallel universes because I know in one we lost him at diagnosis.  I'll stick to this reality, please.

This disease is so insidious.  No moment without a thought for it.  Even when he is sleeping it is on our minds.  It's constant.  We are learning how to incorporate it without letting it rule our lives but some days it is the dictator.  Shots in the middle of the night, juice for lows, adjustments of insulin, doctor appointments, constant blood sugar monitoring, carb math.......It doesn't rest, so neither do we.  Sugar Bear has had about two weeks of going low around 3pm and 6pm.  We adjusted with the endo and hopefully that will help.  But now he's not feeling his lows.  He had one of his lowest lows recently and we only caught it because it was snack time and time to test.  No symptoms.  No cold hands.  No sweating or shakiness.  That makes me nervous.    

We had our last endocrinologist appointment for this year yesterday.  His A1c was 7.4.  Three months ago it was 7.6.  Not bad, actually really good.  The next appointment in March is fasting labwork.  He has to have his thyroid checked regularly and right now he has gained too much weight.  We're hoping that more exercise will help with that but it's a vicious cycle with Type 1.  Insulin is known to add weight.  Exercise drops blood sugar.  Treat for the low.  More exercise.  More lows.  More calories.  But I have hope.  I have to.  We got this. 

We're coming up on his first "diaversary" and lots of things weigh on my mind.  Holidays have always been reflective for me anyways and this year it's a little more challenging.  I keep thinking back to how we, and especially Sugar Bear, were last year at this time.  20/20 hindsight and all that sucks.  I have to learn to let it go.  The what ifs and how did I miss's are just no good.  He's here; we go forward.

Big News

Well, it's been a few weeks since I've written.  I apologize.  It's been pretty busy with all kinds of changes and challenges.  I put my two weeks notice in at my previous job and had orientation at my new job.  It's a good change and I am very excited for the prospects.  For one, I won't be only doing cakes!  That's big.  I love making cakes but doing it all the time for production is physically exhausting and my body wasn't handling it as well.  I'll still get to make cakes.  I'll make them at home and when I make them at work it won't be my only job.

Sugar Bear has started giving himself shots.  For two days he gave almost all of them!  This is a big move and he came to it on his own.   We are so proud of him.  He impresses us daily. 

We are participating in the Pin a Personality to bring awareness to the blue circle to globally represent Diabetes.  We were thrilled to have our former Mayor and Community Commissioner candidate agree to do so.  He has worn it a lot and sent us numerous photos.  Thank you Gary Leitzell!  My favorite is this one. "I am wearing  the blue circle International Diabetes Federation pin in this Dayton Daily News photograph from today's article. http://www.daytondailynews.com/photo/news/local-govt-politics/three-person-county-race-likely-to-be-close/pCRH3P/"

Stay tuned to see who the other four people I've picked.

Something else we are participating in is #freediabetics.  Sugar Bear wanted to do this especially since a boy with Type 1 around his age came up with it.  

We had our second JDRF walk yesterday.  Unfortunately there was an accident with one of our friends' children before the walk and they had to leave.  Good news is he was okay.  We missed walking with them.  We had four adults and four children total that were able to walk.  Hubby had to sit it out.  It was a 5K and Sugar Bear fought a few lows (including 3am) after the walk but woke in range this morning. 

We are gearing up for the holidays.  Getting costumes ready and especially figuring out our plan of action.  We will not have a repeat of Easter!  Sugar Bear has taken on so much more responsibility for his disease that I think (fingers crossed) that the upcoming holidays should be "normal". 

More to come.......

Answers

Answers to the test:
1.A   2.B  3.D  4.B  5.B  6.D  7.D  8.D  9.D  10.A  11.A  12.D  13.B 
14.  in order N,L,L,N, N, L, N, L
15.  in order F, F, T, F
16.D  17.A 
18. in order H, H, H, H
19.C  20.A  21.B  22.A  23.A 
24. in order L,L,L
25.D  26.A  27.D 28.D   29.A  30.C
31. in order T,T,F,T
32.D  33.B  34.C  35.C  36.A  37.A

How did you do? 

My husband missed the fewest when we had to take it.  And the teenager missed one more than me.  We were all exhausted and super stressed when we took it.  We've learned so much more since then. 

The Elephant in the Room

 Basically insulin is a key for allowing the glucose (breakdown of food in our digestive system) to be utilized by our cells, all our cells.  Without insulin, glucose builds up in the blood stream causing high blood sugars and ketones and eventually death.  Before the discovery of insulin in the early 1920s by Banting and Best, children were put on a starvation diet to try and prolong their life.  Type 1 diagnosis was fatal.  The main difference between Type 1 and Type 2 (besides the autoimmune response in type 1s) is about the insulin.  Type 1s produce little to none and type 2s are resistant to the insulin their pancreas still produces.  When a child that is Type 1 reaches puberty they can become insulin resistant as well.  Some are put on drugs typically used for Type 2s as well as their insulin regimen.  So those are some basics.  Let's talk food.

When Sugar Bear was diagnosed we were given at the hospital a little booklet that travels in his kit.  We also were blessed with some iphones from my in-laws and between those two things we can figure out how many carbohydrates are in a meal for our little guy.  And then the learning took off.

 We were amazed at what all contained carbohydrates and how much from bananas, peas, carrots, some meats, some cheeses, peanut butter, breads, potatoes, milk, oj, etc...etc...etc...  We invested in a scale to make some of this math easier and more accurate.  Accuracy is so important in keeping Sugar Bear in range.  And even then sometimes it still doesn't work.  So we also have to take into consideration the  glycemic index of food.  Some foods will cause a spike in the blood sugar that will then bottom out like pizza, fast acting sugars (candies, fruits, juices), etc....   Other foods high in proteins and fats can help to stabilize blood sugar but they can also be high in sodium and unhealthy fats.  Peanut butter crackers after a juice for a low can allow the blood sugars not to spike or drop.  In a body with a normal functioning pancreas these processes happen without any thought.  Your body in preparation for a meal will release insulin.  When all the food is broken down and transported to cells it will stop producing insulin to prevent a low.  Your pancreas will also release glucagan to raise blood sugar if your body were to start going low.  The liver stores some of the glucose to release as well.  In a Type 1 this can be very important if one has a severe low.  It's not something one can rely on which is why we carry glucagon and a syringe with us every where.  And the glucose stores in the liver can be depleted. 

 Now let's talk food choices and the emotional toll diabetes takes.  Imagine you've had the worst day ever.  You can't wait to get home, unwind, grab your favorite comfort food, and relax.  What's your comfort food?  Is it "healthy"?  How would you feel if someone told you you shouldn't have that and then directed you to something they feel is better?  What if it was a holiday?  Do you indulge in foods you "shouldn't" at that time? 

 

Type 1 Diabetes is a never ending, constant source of emotional battering.  From highs and lows, to regular doctors appointments, to worries about long term complications, and social impacts and it all centers around food.  Go to the movies and there is popcorn.  Go on a date and you'll probably go out to dinner.  Friends have a party and there will inevitably be numerous foods (not necessarily "healthy") to choose from. Want to do something healthy like exercise?  Better test and adjust carb and insulin intake. Ever been on a diet or told you shouldn't eat a particular food?  It becomes the elephant in the room.  It's all you can think about.  It's all you want even if you KNOW it's BAD for you.  Can you go one time winning that craving?  How about 100 times?  A thousand?  With Sugar Bear we have taken the very sound advice from another parent of a child with type 1:  Child first, diabetes second.  It doesn't mean that diabetes isn't part of the equation.  It most certainly is.  But when we weigh how to operate or treat him, we err on would we act a different way if he didn't have diabetes?  If the answer is yes, then we have to figure it out. We have to do it. So we SWAG (scientific wild a## guess) that popcorn he had watching a movie with his friends because they wanted popcorn and so did he.   We indulge in ice cream to celebrate moving up a grade.  And he gets chocolates and candies at Easter, Halloween,and Christmas.  He'll get to eat all his carby starchy favorites at Thanksgiving.  And he can most definitely have cake on his birthday.  It becomes about covering with insulin not making him feel different.  Diabetes already makes him feel different enough with testing 6-10 times a day and having to take a shot 4-6 times a day. Feeling awful with highs and lows.  Oh, yea, and doing math just to eat.  This doesn't mean he doesn't have limits.  We all do.  Everything in moderation and sometimes even moderation.  Will we let him sit down and eat the entire Trick or Treat bag in one sitting?  Um, definitely not.  But we wouldn't want him to do that even if he didn't have diabetes.  Will we make him feel guilty for wanting to?  Nope.  But he will get to have it.  We will plan accordingly. 

Testing, testing 1.2.3....

Sudden onset of Type 1 diabetes is like white water rafting holding on to a log for dear life.  Sugar Bear was in the PICU and then moved to the regular part of the hospital after a few days.  Then we had a day of education.  Not really even a day.  Part of the education was injecting saline into each others arms, learning as much info as possible about carbs and how they effect BS.  And we all had to pass a test before we could take him home.  It was a whirlwind of emotions and information and then he was released in our care.  His life literally in our hands.  We've learned so much more since then.  And still not enough.  I thought it might be interesting to post the 36 questions we had.  They were multiple choice.  I'll post the answers later in the week.  Here are the questions:

1.  Without insulin, blood sugar:
     a. goes up
     b. goes down
     c.  disappears
     d.  stays the same
2.  The most accurate way of testing the amount of sugar in the body is by:
    a.  urine testing
    b.  blood testing
    c.  observation for signs of high and low blood sugar
    d.  smelling the breath
3.  In using your blood glucose monitor, it is important to:
    a.  make certain the code number on the test strip vial or packet matches the code number on he monitor
    b.  use only those strips made for your blood glucose machine
    c.  make sure you have an adequate blood drop to perform the test
    d.  all of the above
4.  If your blood glucose reads out 45mg/dl on your blood glucose monitor, the first thing you should do is:
    a.  call the doctor immediately
    b.  drink 4 oz. of fruit juice or sugar containing beverage
    c.  take more insulin
    d.  eat a leafy green salad
5.  If your blood sugar reads out 450mg/dl on your blood glucose monitor, you should:
    a.  call the rescue squad
    b.  check your urine for ketones and get in touch with your doctor
    c.  drink 4 oz. of juice or a sugar containing beverage
    d.  all of the above
6.  Blood sugar should always be tested:
    a.  once a week
    b.  once a day
    c.  after meals and after bedtime snack (at least 4 times per day)
    d.  before meals, at bedtime and whenever your child feels like he or she has a low blood sugar (at least 4-6 times per day)
7. If your blood glucose monitor reads out "HI", it means:
   a.  the meter is not working correctly
   b.  your child is having an insulin reaction
   c.  your meter is giving you a greeting
   d.  your meter can not read the blood sugar because it is greater than 600mg/dl
8.  Blood and urine test strips should be:
   a.  stored at room temperature
   b.  re-capped as soon as strip is removed from bottle
   c.  used before the expiration date
   d.  all of the above
9.   You should check your urine for ketones:
   a.  once a day in the AM for the first few weeks
   b.  when Blood sugar is over 300
   c.  when ill
   d.  all of the above
10.  When testing urine with Ketostix, compare the colors after:
   a.  15 seconds
   b.  2 minutes
   c.  5 minutes
11.  Unopened bottles of insulin should be stored:
   a.  in the refrigerator
   b.  in the freezer
   c.  in the kitchen cabinet
   d.  in the oven
12.  Novolog insulin should be given:
   a.  mixed with Lantus
   b.  no longer than 15 minutes before a meal
   c.  within 30-40 minutes after starting a meal
   d.  b & c
13.   When injecting insulin, you should:
   a.  give it in the same place every day
   b.  give it in a different site every day, using your site rotation chart
   c.  I don't know
14.  Mark Novolog (N) or Lantus (L) beside the following things about insulin.
   ____Starts acting 10-15 minutes after injection
   ____Lasts approximately 24 hours after injection
   ____Is a long acting insulin without a true peak
   ____Lasts about 3-5 hours
   ____Peaks approximately 2 hours after injection
   ____Starts acting about 2 hours after injection
   ____Clear insulin in a short & wide bottle, or cartridge
   ____Clear insulin in a skinny, taller bottle
15.  Mark the following statements as True or False (T or F).
  ____Lantus can be mixed in the same syringe with Novolog
  ____Insulin raises blood sugar
  ____Lantus should be given at the same time every day
  ____Injecting air in the insulin bottle is not important in helping withdraw the appropriate amount of insulin
16.  If ketones are present in the urine of a person with diabetes, they will need to:
    a.  call the physician if the ketones are moderate or large
    b.  be inactive
    c.  to drink water or sugar free fluids
    d.  all of the above
17.  Pick the best answer for the following question.

  A blood sugar of 300 is:
     a.  too high
     b.  too low
     c.  normal
18.  Match the term high blood sugar (H) or low blood sugar (L) with each of the following:
   ____Caused by too much food and not enough insulin
   ____Caused by infections, sunburns, or poison ivy
   ____Symptoms may include feeling ill, vomiting, and deep rapid breathing, increased thirst & urination
   ____May need to give extra Novolog insulin
19.  Which of the items below may cause a low blood sugar?
    a.  illness, i.e. earache, infection, tonsillitis
    b.  skipping insulin
    c.  hard exercise (playing hard)
20.  A low blood sugar is caused by
    a.  too much insulin
    b.  too little insulin
    c.  too little exercise
21.  A blood sugar of 30 is:
    a.  too high
    b.  too low
    c.  normal
22.  A glucagon injection is used when a person with diabetes:
    a.  has low blood sugar and is unable to safely take sugar containing liquid by mouth, is unconscious, or is having a seizure
    b.  has high blood sugar
    c.  has the flu
    d.  all of the above.
23.  If your child has a low blood sugar, you should:
    a.  give 15 gms or 4 oz. (1/2 cup) of orange juice or regular pop
    b.  call the doctor for insulin instructions
    c.  tell him/her to go lie down
    d.  give him/her an extra bread exchange at next meal or snack
24.  Match the term high blood sugar (H) or low blood sugar (L) with each of the following:
  ____Pale, sweaty, shaky, may have headache
  ____Confusion:  if left untreated can progress to seizure
  ____Treat with sugar or glucagon
25.  What raises blood sugar?
    a.  stress
    b.  illness
    c.  exercise
    d.  a and b
    e.  all of the above
26.  When a person with diabetes is ill and vomiting, he should:
    a.  check the BG and ketones, then call the doctor
    b.  give the same amount of insulin
    c.  not take any insulin
    d.  I do not know
27.  Before hard exercise, a person with diabetes should:
   a.  take more insulin
   b.  check blood sugar.  If low, treat with juice & then pre-treat for exercise with carbs.
   c.  take less insulin if exercising after the meal
   d.  b or c
28.  The short term and long term goals in managing diabetes are:
   a.  blood sugars as near normal as possible
   b.  normal growth
   c.  freedom from complications
   d.  all of the above
29.  In Type 1 diabetes (insulin dependent or juvenile diabetes), blood sugar is controlled by:
   a.  carefully controlling insulin, diet, and exercise
   b.  removing the pancreas
   c.  seeing the doctor every two weeks
   d.  losing weight
30.  The best range listed for a child with diabetes who is taking insulin is;
   a.  150-250 mg/dl
   b.  60-100 mg/dl
   c.  80-150 mg/dl
   d.  190-200 mg/dl
31.  Mark the following statements as true or false (T or F):
    ____Food raises blood sugar
            Exercise lowers blood sugar
           Illness and stress usually lower blood sugar
_____Blood sugar should be checked at least 4-6 times per day.
32.  Just before a soccer game, your blood sugar is 58 mg/dl.  What should you do?
    a.  Drink juice to treat the low blood sugar
    b.  Pre-treat for the soccer game by eating extra carbohydrates
    c.  Take Novolog for the carbohydrates eaten for pre-treatment
    d.  a & b only
33.  Before a meal, your blood sugar is 62 mg/dl.  What should you do?
    a.  Call the rescue squad
    b.  Eat the meal & subtract 15 grams from the total carbs eaten to treat the low BG
    c.  Do not give any insulin

Use the following insulin doses to answer the next 4 questions:

Blood Glucose (BG) result                  Daytime Correction Scale            Bedtime Correction Scale
Under 150                                                0 units                                             0 units
150-200                                                    1 unit                                              0 units
201-250                                                    2 units                                             1 unit
251-300                                                    3 units                                             2 units
301-350                                                    4 units                                             3 units
351-400                                                    5 units                                             4 units
over 401                                                   6 units                                             5 units

Lantus insulin= 5 units to be given daily @ 9pm.

Carb to insulin ratios:
- Breakfast = 15 grams :1 unit
- Lunch = 10 grams : 1 unit
- Dinner = 20 grams :1 unit

34.  Before eating breakfast, your child's blood glucose was 100.  He/she ate 60 grams of carbohydrates.  How much Novolog should your child get?
    a.  2 units
    b.  3 units
    c.  4 units
    d.  5 units
35.  Before eating lunch, your child's blood glucose was 340.  You checked for ketones, and they were negative.  He/she ate 78 grams of carbohdrates for lunch, and is planning to watch a movie now.  How much Novolog should your child get?
    a.  10 units
    b.  11 units
    c.  12 units
    d.  13 units
36.  Before eating dinner, your child's blood glucose was 210.  He/she ate 85 grams of carbohydrates.  You are planning to take them to the park after dinner to play.  How much Novolog should your child get?
    a.   5 units
    b.  6 units
    c.  7 units
    d.  8 units
37.  You checked your child's blood glucose at 9pm for bed, it was 279.  How much insulin should they get?
    a.  5 units of Lantus & 2 units of Novolog in separate syringes
    b.  5 units of Lantus & 2 units of Novolog mixed in the same syringe
    c.  5 units of Lantus & 3 units of Novolog in separate syringes
    d.  7 units of Lantus

That was the whole test.  My husband, my teenager, and myself all had to pass before we took Sugar Bear home.  Reading over these again I can chuckle at some of the humor and find this to be so second nature on the most part.  So how do you think you did?

DKA

My sister-in-law and a friend I met at a diabetes conference were both recently dealing with DKA.  Both were caused by lack of insulin.  One was because of not hooking her pump back up while dealing with sickness and the other had a bad batch of insulin.  DKA can happen to anyone.  There is a lot of misinformation out there on so many things related diabetes.  I think I'm going to take this week for some education awareness.  My sister-in-law spent an overnight in ICU and a little time in the hospital.  My friend was able to get some treatment at the hospital and work towards regulating back at home.  One of the EMTs that moved my sister-in-law from the health clinic to the hospital said she was diagnosed with Type 1 at 13 and at 18 thought she knew it all.  She ended up in DKA 9 times that year.  One thing I gleaned from my sister-in-law's experience is that DKA won't necessarily look like it did at Sugar Bear's diagnosis.  It's still scary, but I don't have to be afraid.  This was the first time in 13 years for my sister-in-law experiencing this.  It's awful, and Sugar Bear felt bad for his Aunt.  He got it.  I'm still learning.  I'm so grateful for medical breakthroughs that allow DKA to be corrected.  It used to always be a death sentence.

http://www.nlm.nih.gov/medlineplus/ency/article/000320.htm

 Diabetic ketoacidosis (DKA) is a life-threatening problem that affects people with diabetes. It occurs when the body cannot use sugar (glucose) as a fuel source because there is no insulin or not enough insulin. Fat is used for fuel instead.

When fat breaks down, waste products called ketones build up in the body.

Causes

As fat is broken down, acids called ketones build up in the blood and urine. In high levels, ketones are poisonous. This condition is known as ketoacidosis.
Diabetic ketoacidosis is often the first sign of type 1 diabetes in people who do not yet have other symptoms. It can also occur in someone who has already been diagnosed with type 1 diabetes. Infection, injury, a serious illness, missing doses of insulin shots, or surgery can lead to diabetic ketoacidosis in people with type 1 diabetes.
People with type 2 diabetes can also develop ketoacidosis, but it is less common. It is usually triggered by uncontrolled blood sugar or a severe illness.

Symptoms

Common symptoms can include:

• Decreased alertness
• Deep, rapid breathing
• Dry skin and mouth
• Flushed face
• Frequent urination or thirst that lasts for a day or more
• Fruity-smelling breath
• Headache
• Muscle stiffness or aches
• Nausea and vomiting
• Stomach pain

Exams and Tests

Ketone testing may be used in type 1 diabetes to screen for early ketoacidosis. The ketones test is usually done using a urine sample or a blood sample.
Ketone testing is usually done:

• When the blood sugar is higher than 240 mg/dL
• During an illness such as pneumonia, heart attack, or stroke
• When nausea or vomiting occur
• During pregnancy

Other tests for ketoacidosis include:

• Amylase blood test
• Arterial blood gas
• Blood glucose test
• Blood pressure measurement
• Potassium blood test

This disease may also affect the results of the following tests:

• CO2
• Magnesium blood test
• Phosphorus blood test
• Sodium blood test
• Urine pH

Treatment

The goal of treatment is to correct the high blood sugar level with insulin. Another goal is to replace fluids lost through urination, loss of appetite, and vomiting if you have these symptoms.
If you have diabetes, it is likely your health care provider told you how to spot the warning signs of DKA. If you think you have DKA, test for ketones using urine strips or your glucose meter. If ketones are present, call your health care provider right away. Do not delay. Follow any instructions you are given.
Most of the time, you will need to go to the hospital. There, you will receive insulin, fluids and other treatment for DKA. Then doctors will find and treat the cause of DKA, such as an infection.

Outlook (Prognosis)

If DKA is not treated, it can lead to severe illness or death.

Possible Complications

• Fluid buildup in the brain (cerebral edema)
• Heart attack and death of bowel tissue due to low blood pressure
• Kidney failure

When to Contact a Medical Professional

DKA is often a medical emergency. Call your health care provider if you notice symptoms of DKA.
Go to the emergency room or call the local emergency number (such as 911) if you or a family member with diabetes have:

• Decreased consciousness
• Fruity breath
• Nausea
• Trouble breathing
• Vomiting

Prevention

If you have diabetes, learn to recognize the signs and symptoms of DKA. Know when to test for ketones, such as when you are sick.
If you use an insulin pump, check often to see that insulin is flowing through the tubing. Make sure the tube is not blocked, kinked or disconnected from the pump.

Conscious

Chronic. Acute. Disabled. Disease. Life threatening. Lifetime. Pain.

I'm starting to get it.  I'm starting to understand.  Chronic pain was always something I felt could just be incorporated into your life with little change.  Acute to mean meant something serious.  But I get it.  Dealing with my herniated back has caused me to contemplate how I view these things.  It's helping me to empathize with my husband and son.  Every moment has to be done with awareness.  You have to plan and think about your movements or you will cause excruciating and debilitating pain.  From the simplest things like taking a walk or just getting up in the morning you have to decide to do it.  For my husband that means just getting out of a chair takes work.  For my Sugar Bear that means living each day.  We have to be here, be awake to keep him alive.  We have to use our sleep deprived brains and make them work.  We calculate carbs and hope we don't make mistakes.  A mistake could cost us something precious.  So we second guess and triple guess everything.  We check and check again.  Did we count too many carbs and give him too much insulin?  Too much insulin could result in a low that could cause seizures, brain damage, coma, and death.  Did we not count enough carbs and not give enough insulin?  This could result in highs that could lead to damaging his body, ketones, and DKA.  I question everything.  "Did I just give the evening insulin?  Did I use the right carb to insulin ratio?  Did we count the carbs properly?  Is he sleeping because he's tired or because of a low or high?"  Check to make sure he's breathing each and every morning.  So thankful to have him wake from slumber.  It's exhausting, challenging, scary, awful and at times beautiful.  The alternative I can't even contemplate.  Every shot saves his life.  Every blood sugar test makes it possible for him to have a happy, healthy, long life.  A life worth living.  But every day is a fight.  It's not manageable or controllable.  Everybody is different in how they react to stress, food, medicine.  Sugar Bear could eat the same thing at the same time every single day and have a different blood sugar each and every time.  Sometimes high, sometimes low, sometimes "perfect".  So we fight.  We live.  We are so grateful for insulin that let's us do this, because without it...well, I just can't go there.

 

We had our three month endo appointment two weeks ago.  I really thought his Ha1c was going to be higher based on the numbers in our logs.  Amazingly it was a tiny bit lower.  We talked about nutrition, exercise, eye appointments, flu shots, cgms, and ketone meters.  I want Sugar Bear to have a CGM even more than a pump but he's not ready.  And it is his disease.  His life.  We did get the blood ketone meter so now he won't have to pee on a stick.  We're getting ready for cold/flu season.  We have to be prepared.

 

Same day we had the endo appointment Sugar Bear had an ortho appointment.  It went well.  One of the dental assistants made a point of telling me she was donating to JDRF.  A stranger that Sugar Bear has affected.  We have a walk to raise more funds in October.  I hope my back can handle it.  We plan.

So we keep on walking.  We keep on working.  We take each moment step by step.  There is no alternative.  There is no day off.  There is no break.  We do it consciously. 

Dr. Jeklow and Mr. High

Have you ever lost your temper because you were hungry?  Ever feel super sleepy from overeating?  How about your brain having trouble functioning because you haven't eaten in hours?  What about your arms, have they ever felt like they were weighted down when you were super exhausted?  Well, I have a little story for you.  It's about Dr. Jeklow and Mr. High.  

When Dr. Jeklow is around it's pretty scary.  He can show up completely unnoticed and startle the wits right out of you.  He might be weepy when he arrives.  Sometimes it seems like he might have had a bit of alcohol because he'll even be slurring his words and not making a lot of sense. He might appear pale and his hands can be ice cold.  He just needs to be treated sweetly and then he'll go away but give him too much and he turns into Mr. High.  Hopefully Dr. Jeklow doesn't pass out because you might need outside help if that happens.  Sometimes he doesn't like being treated sweetly and won't understand what you are doing.  You just have to persevere.  Otherwise he could knock you out or even cause you to die.

Mr. High can be rude, demanding, and angry.  He's sweaty and warm to the touch.  He might be weepy too.  He doesn't really care how you feel.  He is also typically ravenous and occasionally lethargic.  His brain doesn't seem to be engaged when he visits, and you can't wait for him to leave.  Don't take anything he says or does to heart.  He doesn't really mean it.  It's just his nature.  He is always super thirsty and sometimes drinks so much he has an accident.  It must be pretty embarrassing for him to always feel and act this way.  Unfortunately the only way to get rid of him is by artificial medicine you have to inject carefully.  If you let Mr. High hang around indefinitely he might just kill you.

Lookout for these two killers and respond appropriately.  Continue to fight them off and live!  But don't live in fear because then Mr. Jeklow and Mr. High's mutual friend, Mr. Typ-e-one Diabetes will have succeeded.

Reflection

I have wanted to write and wanted to write since Monday but haven't known where to start.  I know it's been said in many different ways and so many places but Robin Williams' death effected me immensely.  I remember watching him on Mork and Mindy when I was just my Sugar Bear's age.  My younger brother and I would act out scenes from the show.  I had rainbow colored suspender's.  I grew up on Robin Williams.  He influenced my life with his shows and movies and comedy. In my own naieve way I loved him.   I married my own version of Robin Williams in my husband who is hairy and funny too.  Anyway, with all the loss we've had this year, Robin Williams suicide was the straw in many ways.  We took time this week to rewatch a kid appropriate favorite, Hook.  And then the constant barrage of information started happening on FB and Twitter about choice and suicide and depression.  It took me back to my teenage days.  After my parent's divorce.  I called the suicide hotline many times during high school on into college.  They saved my life.  In college I got counseling.  It helped too.  I still have bouts with depression but not as many in recent years.  It  lurks in the far corners of my mind.  It's the negative voice.  But I'm better.

My brother and I as children at Halloween.

Speaking of high school, the Teenager returned to school as a Freshman on Wednesday!  Where did the time go.  I do believe his high school experience will be better than mine was.  He does seem to stress himself out about grades and classes.  He was so nervous and excited.  A few more headaches again but better.

First Day of School

On His Way

Sugar Bear started having high BS about a week and a half ago.  We called the endo but got the automated machine and left the numbers.  We didn't hear back from them.  The numbers were much higher than we've dealt with.  Lot's of ketone testing this week too.  Luckily we didn't really
have those (just trace and small).  Finally called the endo on call on Thursday and it just happened to be our doc.  She said she never got the numbers!  It'd been about 3 days!  Uuggh.  Anyway, changed the evening dose, the insulin to carb ratios for all meals, and the bedtime corrections (now we start at 200 again).  So far it's a bit better.  He hasn't been as high, unfortunately he also hasn't been completely in range and we've dealt with some lows. One being today at 3pm (normal snack time) and he was 57 with no awareness of it. The worst low was the one that happened Friday night after visiting friends.  He was in range at midnight and I felt like I needed to check him at 2am instead of 3.  I'm glad I did; he was 62 and it took awhile to get him in range to sleep.  I didn't sleep much that night.  Of course I ended up reading about a drive-in in NJ where a teenage boy was kicked out due to the food he had in his kit. Food that keeps him from having a low while his family drives to that drive in.  Food that allows him and his family to feel normal.  To worry less.  Not only the incident but the comments completely disheartened me.  Of course that started me down the rabbit hole where I found out about type 1 adults that have been beaten by cops who thought a hypoglycemic episode was drunkenness or drugs.  Made me absolutely speechless. Made me nervous for what my son could experience in his life.  If it can happen to a former Mr. Universe at a movie theater with his family while he's headed to the concession stand because he knows he needs (not wants) some sugar to raise his blood glucose then it could happen to my son as a grown up.  I know what avenue I'd like to take my advocacy.  Education is badly needed!  

We did get to see Guardians of the Galaxy at the Drive In before school started.  And our type 1 was safe with his snacks!  Of course we visited the concession stand too for the rest of us. 

Our Fantastic Drive In

Yum!

Protein (helps stabilize blood sugar and typically has no carbs)