Monday, 21 January 2013

Our Story

I've been meaning to post our story for awhile now.  Since we are quickly approaching our first diaversary, I figured now would be a good time.

I'm a pharmacist at the local hospital.  I have some trainging and background in diabetes.  I've completed the Canadian Pharmacists Association's Diabetes Strategy continuing education program, and my maternal grandmother is type 1, for about 60 years (that's a story!). However, I just didn't believe Amy could have diabetes.

My family always worried about me and my sister.  We had always heard that diabetes skips a generation.  I was tested often growing up, and was just always around it.  I didn't know the ins and outs until I went to university, and even then, book learning is totally different than experience.

I don't know if this has anything to do with Amy's diagnosis, but the evening after she was born, she had low blood sugar.  Low enough in fact that they came to my room and took her away.  They finally told me that they were hooking her up to a dextrose infusion.  I had issues breastfeeding, so we eventually put her on formula before the whole BPA-free thing.  There were times over the next few years that she would complain of a sore belly awhile after eating, but we would think it had to do with bowels.  I can honestly say that I don't know if she always had declining pancreatic funtion or insulin resistance or if she developed it after her the really bad gastro ("stomach-flu") she had last September.

January 2012 started like any other year.  Amy went back to Half-day Kindergarten in the afternoons.  She would eat her lunch at 10:30am, catch the bus at 11am, go to school, and be back home again by 3:15pm.  My mom is our daytime caregiver.  She mentioned that Amy seems starved ALL THE TIME, and that she spends a lot of time going back and forth to the fridge water dispenser. I brushed it off.

We took a weekend road trip with the girls 520km each way just to go shopping.  Halfway there, about an hour after lunch, Amy complained of a very bad belly.  We asked her when the last time she did #2, and she didn't know, so we pulled over to let her try (it's a gravel road with minimal traffic, not a true highway!). She couldn't do anything, but the sore belly passed with time. 

My mom started talking diabetes a few times, I would cut her off, even once blurting out "she doesn't have &@$!ing diabetes (sorry mom, you now know it was in the back of my mind too).

Amy started dribbling in her panties throughout the night.  This child never even wet the bed while nighttime training.  I helped her the first few nights, then I would just wake to find a pair of panties.....or two on the bathroom floor each morning.  We yelled at her, it was frustrating, she was almost 6 years old and starting wetting the MUST be from all that extra water.

We limited the water.  She begged.  We put a time limit on when she could no longer have anymore water before bedtime.  She'd cry.

One day I helped her get ready for school and noticed her leggings were baggy......they used to fit.  Imagine baggy leggings, they're suppose to be tight.  I didn't weigh her.

That nagging feeling was becoming more nagging.  I made an appointment with our family physician, but the earliest I could get was 3 weeks away.  

The final draw for me came one day in February!  February! We were playing Carnival Games on XBOX.  Amy was riding a pig and slapping her thigh to make it go faster.  She had a blast!  At bedtime, she said "mommy, look at my leg". She had a HUGE bruise all over her thigh.  I told her it was okay, kissed her goodnight and went to the family room to talk to my husband.

"There's something wrong with Amy".

"What do you mean"

"It's not normal.  Everything lately, the water, the dribbling, this huge ass bruise she just got from playing"

"Well do something about it.  Take her to Emerge"

"And  what, tell them that something's wrong with Amy, but I don't know what.......(silence).......I think she has diabetes"

"No she don't..........get her checked then"

"I'm going to work.  I'll take home the glucometer there and test her myself.  I'll be back soon "

And so, I got dressed, went out in the -30C night and got a glucometer.  I cried the whole way home.  I knew.  I just knew.

She didn't even wake when I tested. 19.8 (357).  S**T! She has it.  I went out and told my husband.

I checked the ER doctor list and our family physician would be there the next morning.  I brought back the glucometer and was convinced by a nursing friend to speak with the doctor that night.  He convinced me to go home and bring her in, "saying he would have no piece tonight knowing this now".

I returned home, got Amy out of bed.  Took a few things to do and brought her right over to the ER. They checked her urine.  +++ glucose, no ketones (that I remember).  Her sugar was 22 (396).  Yup. She has type 1 diabetes.  I nodded.  I know.

They had a nurse come in with some 30/70 to give her her first shot until we could see the CDE the next day.  Amy saw the needle and started to cry.  "I'm sorry. I'm sorry. I won't drink so much.  I won't. I promise. I'm sorry.....mommy....."  My heart broke.  I cried. Amy cried. The nurse cried.
Amy got her first shot.  They showed my how to give it for the next morning.  They were going to send us home with no glucometer so I went down to my office and got one.  We went home.  That was it.  Our life was changed forever. February 8th.

The next day we saw the CDE for a few hours, the next day we saw the dietician, then the CDE again.  And that was it.  We went home with a book and a duo tang full of handouts.  Here you go, if you have questions, call us.

I scoured the Internet for kids sites.  I read. I learned.  We both gave injections.  Mom first, then dad. The CDE later mentioned that she didn't even show us how to inject using the pen.  Good thing I read so much.  Good thing I'm a pharmacist.

Such tiny doses, only 1U NovoRapid at breakfast and supper. 3NPH with breakfast & 2 at bedtime.  Good thing she's such a good eater, we didn't have to adjust our diet too much.

We learned. We adjusted. We read. We tried. We survived.

February 8th. If I had waited until the next morning, it would be the exact same day that my grandmother was diagnosed 60 years before.  She took it hard.  She blamed herself. She was there for us.

About a week in, we're at the supper table and Amy says "having diabetes is better than dying".  I smile at her while my insides crumble, yes, baby, having diabetes is better than dying.  I have to get up from the table before the tears spill.

Two weeks in we battle our first stomach bug.  Ketones, low sugars, barfing, hospital, more reading.  We made it through.

It's almost a year.  We're still learning. We're about to take the next step and are waiting for our pump to arrive. 

I say we/our because although its her condition, we are managing it together.
As a Family.

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