Monday, January 31, 2011

Anthony and Julie

Evander, Josephine and baby Reuben

Meet Reuben.  He loves to eat spaghetti, play in the bath, chase the dog and watch movies.  His Diaversary (diaversary to those in the know, is the anniversary of diagnosis with Type1 Diabetes)  is 31st May, 2010 at only 8 months old.

Denial, Diabetes & a whole new world

What a wonderful thing denial can be!   Like when you stand on the bathroom scales. My favourite thing is to wind back the dial a few kilograms so when I get on Im the weight I want to see !   Honestly my first reaction to diabetes was denial. 

But how?  What causes it?   I havent done anything to cause it?  Your tests were wrong!  Should you test him again?   This doesnt happen to us, our kids are healthy and whole.   This happens to other people.   Will he be cured?   Getting medicine into his body he will be better and then we wont have to think about diabetes ever again, right... Its just like taking an asprin... ummm. No.


In diabetes there are no bandaids.   Theres no cure.   We have insulin and thank God for the man that woke up one morning 90 years ago with the idea of using porcine and bovine insulins!

We spent a week in a ward at the hospital where Reuben didnt leave my side.  Even when busting to go to the ladies room (I felt like I may explode like Augustus Gloop from Charlie and the Chocolate Factory!)  Augustus Gloop Augustus Gloop the great big greedy nincompoop!  Wait, where was I? 

I would wait until Reubens Daddy would arrive to take over the watch.  Only then did I feel I could take my eyes off him and have a shower and eat.   I guess it was fear.    The nurses would offer to watch him but somehow  the offer didnt appeal.   As the days passed Reuben began to perk up.   I knew he was feeling better when he began flirting with the nurses and trying to rip out his IV. 

I will never forget those days and nights spent out in the hospital playground getting fresh air and wondering why us.  (Also I pondered why the haunting clown theme. Ick.)   Deep down I knew how dramatically our lives would change.   I just didnt want to face it.

Our diabetes educator was lovely.   We met endocrinologists.   We spent time with nurses.   Heres the short and sweet version -  Diabetes sucks.   You use needles to get insulin into your body subcutaneously up to 6 times a day.   Testing with a lancet (yep you guessed it, another needle!)  up to 8 or 9 times a day in a baby to gauge where blood sugar levels (or BGL blood glucose levels) are sitting.   It amounts to a whole heap of pricking and bleeding.  Every day.

Type 1 has nothing to do with his lifestyle in terms of developing it.  His poor pancreas was under attack and his body decided it didnt need something he infact needs and killed it off.   Where we make insulin to take our sugar around our bodies he hasnt got that ability.   When it comes to managing the condition, lifestyle has everything to do with it!   Imagine one of those old fashioned see-saws in the playground.  You know the type that didnt have handles, it was an old worn peice of wood that left splinters in your wee hands while you clung on for dear life?   Remember how you got stranded up top when your brother and sister ganged up on you and both chose to ride on one side leaving your flailing and screeching in mid air?  (So not a good idea. Who do you email about things like that?!)  

So my metaphorical Diabetes see saw is this - on one end sits food and it makes your blood sugar go up.  On the other is insulin and exercise.   It makes your blood sugar go down.  Somewhere in all this mess we are trying to get his blood samples to level out between 5 and 12 mmol/l.    I hear you asking does this aforementioned seesaw ever stop in the middle, level, static.   No because just being awake, eating, playing, walking, running, getting a tooth, make the blood sugar swing.   Diabetes isnt an exact science.   Its more like a juggling act !

Home we go armed with our newly diagnosed Type 1 son, a bag full of insulin, a shopping list of supplies to get from Diabetes Australia and Rufus the bear with diabetes (a free bear from Juvenile Diabetes Research Foundation).

This was the 'staring into the deep ravine' moment.     A child doesnt manage diabetes.  Reuben has the dodgy pancreas and I manage his diabetes.  It washes over you as a parent and main care giver.

I am responsible  to keep this child alive even though high blood sugar  (hyperglycaemia) tried to kill my son.   I am responsible to give him insulin each time he eats to prevent that happening. I have to monitor him incase a hypoglycaemic (low blood sugar) episode also tries to steal him.    It is unrelenting.   The anxiety, the pressure, the consistency, the planning, preparing,  the managing, the carbohydrate counting, the estimating.    I do it full time and have done so now for 8 months. 
Just as long WITH diabetes as WITHOUT.   And Reuben is only 16 months old. 
Whats noteable about the intensive care unit

1: The important machines that look big and scary and keep tiny babies alive make noises like circus clowns at ridiculously annoying intervals
1b: When you fall asleep sitting up while stroking your babies arm you begin to dream you are playing the pokies but theres no jackpot!
1c:  There are so many tubes they are a safety hazard.  Someone should look into this.
2: The people in ICU need rest to get better but the place absolutely bustles 24 hours a day
3: The unspoken rule is dont look at other patients because you will see things that will be etched indelibly in your mind for a long time
4: When in the parent waiting room only discuss the weather or something on the tv (incidentally at the time it was Gary Coleman passing away from Different strokes fame). If you begin discussing health issues you will experience localised flooding from all the tears
5: You understand life can be pretty cruel and unfair but it gives you the opportunity to cry out to God and pray Lord I have no idea whats wrong with the boy in the bed next to my son but they bring bags and bags of blood every few hours. Please heal him too....

The first night I couldnt stay with Reuben I was exhausted and went home to sleep. That was pointless as I missed him like someone had my second leg. I snuggled up with his tiny pajama shirt still smelling of fruity acetone (I later learned this was the smell of ketones - when fat is being broken down by the body for energy because although his system is saturated with sugars he lacks the right processes in his pancreas convert this sugar for energy.)
Reuben was moved to a normal ward after two days.


Reuben was my third child and a real joy.   His birth went perfectly and I fell in love with him just like his brother and sister before him.   There was something different about him from the start.   He was very passionate about his breastfeeding.   He would screech for food and water then be miserable when he got it.   It seemed I was always at the medical centre looking for answers.

One sunday at the end of may 2010, my 8 month old son lay lifeless cheek resting on the bed. His chest moving in tiny increments, breathing barely perceptible. Hes been sick a long time. Weary eyes staring at me and Im screaming inside my own head. Hes going to breathe his last breath and give up. Another voice in my head. Do you want your son to die? Adrenaline rushes through my body I grab a bag and head to the emergency department in the hospital. They take me through immediately and hit me with a barage of questions that always make me feel like Ive done something to be blamed for my ill son.

A young doctor spends alot of time watching Reuben who by this point  is so lethargic he can no longer stand. Hes vomitting, screeching for water. Dr comments thoughtfully that my story doesnt add up that he cannot have a mear virus. Theres more. He leaves and comes back. More questions, more probing, more watching Reuben. Too long he says. Hes been sick too long, lost too much weight, has unexplained vomitting that recurs.  I later thank God for this young doctor.

I sign consent for blood work and off Reuben goes. It feels like an eternity I watch people come and go its all a blur I know something is really wrong. They come back with a head doctor on duty. Wrapped in a huge white woven hospital blanket is my son dwarfed by this cocoon. Hes only in a nappy and from his skin comes the familiar fruity smell. Theres something you need to know about your son. Head swimming and eyes cannot focus, my ears have the noise of trains clattering between them.

I hear some of what he says.

Your son has type 1 diabetes...he is very sick. His blood sugar is three times higher than it should be right now. He feels very grotty and acidic inside. This condition is called diabetic ketoacidocis. We are preparing to take him to intensive care right now to stabilise him. Good thing you brought him in when you did he could become comatose....
Walking beside the hospital crib as they wheel it to ICU Im terrified but flooded with love for my tiny baby. So helpless and connected to tubes and machines. I cannot cry for Reuben I have to be strong for him and I will cope is my vow.

Sunday, January 30, 2011

The end of life as we knew it

End of life as we knew it?   Absolutely.   It was like standing on the edge of a cliff, staring down at my feet only inches from the plunge, knowing I had to jump no matter what.   Immediately my head swam and my stomach knotted up;  there was that implicit understanding I must face life a different person, face a different life, and face it suddenly against my will.   Sounds dramatic, right?   Well it was, it has been and it will continue to be. Anyone who knows me well says I exaggerate.  Nothing should get in the way of an entertaining story?   Well this is not fiction.  This is the story of type 1 diabetes being thrust on my baby son at only 8months of age.    Diabetes is a chronic disease at this point with no cure and no real cause.