Posts tagged Mater Children’s Hospital

Pump Up The Jam..And The Cake..And the Doughnuts…

To all of our family, (biological and extended,) friends, fellow D Bloggers who sent their best and even complete strangers who heard about Lance’s “story”, I’m very pleased to report that Lance is home, happy, and has his insulin pump fitted!

Being such a momentous reason to celebrate, Lance and I trekked into Brisbane City, where we chowed down on a fresh doughnut, with pink glaze icing. When we were served, Lance looked at me with panic stricken eyes. It was the most joyous feeling to reassure him that he could have doughnuts occasionally, and that the press of a few buttons would take care of the insulin required to keep his blood sugar levels in a healthy range.

 

A delicious reality...

A delicious reality...

So far, his readings have been super, and I haven’t felt “that” internal sensation of butterflies on amphetamines due to a deathly low or ridiculous high reading for almost a week now!  Lance has had only 2 hypos this week! Both were treatable, and I didn’t feel like I needed a session with Dr Phil after he had recovered!

 His endocrinologist would like him to eventually strive for readings between 4mmol/L and 8 mmol/L. I am elated to say that he isn’t far off these levels, and is achieving amazing readings without a great deal of effort! Fantastic basals, Doc. Thanks a bunch.

Lance chose a uber cool, steel grey Medtronic Paradigm pump which he has adjusted to wearing without any issues whatsoever. His initial fears of “What will it feel like to sleep with it?” are thoughts of the past. Despite the Pump Education being very swift, I have emerged feeling very confident with site changes, and bolusing for meals and snacks.

My “Bible,” Fats and Figures, by Karen Daly, is never far from sight; it has proven to be a fantastic reference book for counting carbs.

In the past hour I have spied used test strips in the bed, on the floor, in the car,and even in the washing machine! Never has there been so many fingerpricks performed! The house is untidy, but not dirty. For once, I don’t care in the least. My son is calmer, more stable, less vulnerable, and radiating pure happiness, without a mention of a headache or aching legs. No more guzzling water or lying listlessly on the sofa…

Finally, he’s just Lance.

Here’s to the life you were meant to have, sweetheart. This is how seven-and-a-half year old boys are supposed to behave and feel.

Our sincere thanks must go to Louise from Medtronic, Dr C and the Staff at the Mater Children’s Hospital.

 You all played intergral roles in getting Lance off the syringe diet, and pumping his way to carefree, less chaotic days.

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Project365:Australia:Day 25: Diabetes: A Family Disease

Dear Diabetes

You and I have a tumultuous relationship. Over the past 5 years, I have finally accepted that you are not going anywhere. If I am respectful and dutiful to you, you often return the favour, other times you spit in my face. Without sounding dramatic, I have finally accepted that you will always consume my every thought, and that the life I had is totally non-existent, never to return.

For starters, the shock and disbelief that you had ever-so-cunningly invaded my baby’s body without me even realising leaves me with chills and tears spilling onto my desk. I look at photographs of my baby Lance 3 months before diagnosis and I cannot tear my eyes away, because I know that you had already begun the beta cell revolt in his body. His piercing screams in the middle of the night had already confirmed that you were destroying these virtually perfect, brand new cells. ( The doctor’s initially diagnosed these screaming episodes night terrors.)

When you had caused the most of your devastation, the real symptoms came out in my son. Insatiable thirst, 24 wet nappies a day, lethargy, sunken eyes, screaming for no reason (apparently your earlier “night terrors” were severe leg cramps.) You also would have had had nausea, abdominal pains, you had thrush and ulcers in your mouth and on your genitals, and the most horrible side effect of all is that you lost a fifth of your body weight in 4 days. I knew you had diabetes, purely because of your lust for water-you were literally drinking it and passing it straight through-and drinking up to two litres a day.

At the hospital I sat whilst you were examined and I was asked my whole medical history and your short medical history. I looked back and we made phone calls: There was no cases of Type 1 or 2 Diabetes in your maternal or paternal families, even going back 3 generations.  The paediatrician carefully examined your feet, looked closely into your flinching eyes, and then started you on a drip. In amongst all of this terror, two things happened. I read an information sheet about the pre-symptoms of Type 1 Diabetes. You had every single symptom,in its most extreme form. The phrases “insulin dependent,” ” your son will die without his injections,” ” constant care” were carefully explained to me.

I spent a week at the Mater Children’s Hospital learning how to care for you and asking questions all day, all night to anybody who would listen. I read nursing journals with chapters specialising about Type 1 Diabetes, I was introduced to JDRF and Diabetes Australia and given tremendous support by their extensive “what-to-do-when-your-child-is -diagnosed-with-Type 1Diabetes” support information. The nurses and paediatric endocrinologists were living saints.

We were finally allowed to take you home after six gruelling days spent in a hospital ward.

The drive home was surreal. It felt like everything was different, and nothing would be the same, even though we had done that drive hundreds of times before.

I had a beautiful and highly acknowledged nursery of wild and exotic plants that I lovingly nurtured and took meticulous care of. It was my private sanctuary. When we finally got you home, I forgot all about them, not out of lack of wanting to, but because I was on 100% patrol. Night duty, sleep duty, working out how I could distract Lance from the injection in his soft little tummy that he had to have before he ate.

(One night I went out to sit and ponder with my plants, who all had a different story to them, and there they stood, dead or lifeless  in their pots. I didn’t even care. I tried to salvage a few, but I realised that I wouldn’t have the time to nurse them back to health.  I had my own real life Special Care Unit operating inside the house. I had let them perish without a thought, as my son was so much more important. It was a very poetic moment. I didn’t open the door to the nursery ever again until I moved out of that house. )

Going out was the worst part. Not only did I have a nappy bag, I had a bag full of doctors’ numbers, glucometers, glucogon pens, spare clothes and nappies, bottles of water, bottles of apple juice..something to cover every diabetic complication.

Family and friends started talking about things that Lance did as a baby, and how wonderful his first birthday was, and even his attachment to favourite toys. I would stare in his room and focus only on the the things that would keep him safe that day. It soon occurred to me that I had absolutely no recollection of Lance’s life pre-diabetes. Some hazy bits about his birth are there, but there is no way that my sub- conscience is ready to give in and let me see the life that was.

After mentioning it to my GP, I was referred to a psychologist who diagnosed me with  Post Traumatic Stress Disorder. Even today, I only have photos and video footage and my family’s stories to rely upon concerning my baby’s life as a person without Type 1 Diabetes. Occasionally, I will see a baby in a pram smile behind a dummy, and I will have a quick flash of  Lance as a baby doing the exact same thing, but before I have time to savour the memory, it’s vanished again.

Before you gatecrashed our life, I was a fashionable cosmopolitian woman, who knew the entire goings on in the city. The first thing that I did when Lance was diagnosed, was bought myself an expensive eye cream, because I knew I was going to need it.

 I was right. This year, I turned 30, and I look at photos of myself as a young 24 year old mother with joyous, laughing eyes. These days, they are dull, and lifeless, and there is no time for the eye makeup that I used to wear to play up my red locks.

I was so touched that Lance’s father (who, even though I am separated from since 2003; we are still close friends because we want to be, and for Lance’s sake) presented me with a package for Christmas this year.

In this photo, is a small, expensive but amazing jar of eye cream. Even after the most traumatic nights, when honey and lemonade, strips and lancets are strewn from one end of the room to the other, an application of Clinique “All Around Eyes”can make you feel like you can face another day, no matter how fabulous or terrible it is. When people come to the door, I don’t feel like I am a closet alcoholic because I able to look them directly in the eye with confidence and not have them notice that my eyes are almost slits, ot thst I  look like I am literally dead inside. It’s amazing that a container so small could contain so much power and make me feel so positive about the New Year.

A little jar of pick-me-up cream

 

Diabetes makes me feel like I don’t need “that new dress” or
“that new haircut,” because I am constantly thinking about saving money for an Insulin Pump or even a trial that could be ongoing in the Eastern States. It makes me put myself last. Naturally, I have Lance’s primary needs to cater for; food, clothing, shelter, education, and then his health requirements- special low GI foods,expensive gluten free products, and supplies to keep him alive.

Then there is Diabetes. I save money for an emergency flight or for an Insulin Pump, which I know is going to change Lance’s life for the better. I always have to keep money aside for after hours doctor’s visits as well- because Diabetic complications are reknowned for appearing one minute on a Friday afternoon after the Doctor’s Surgery have shut. Weekend pharmacies are also a money vacuum- you can easily hand  over $50 and get coinage in return.

Our pets, Chino and Luna provide love and comfort. In return, it’s a pleasure to provide them with the foods that they like.

And then there’s me. I t’ll be my turn after the dentist and the insulin pump. 😀

Insulin is not a cure.

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