Simple Words That May Help Your Diabetic Child
Diabetes in not a diagnosis anyone wants, or wishes for, especially for their child. But it happens every single day… When Jenna was diagnosed with diabetes she was already on hundreds of medications weekly, and this was another regime to add to the already overwhelming list of things that she had to keep up with daily. When she presented to emergency I really did not know what was going on with her, or what diagnosis she would receive this time. The ridiculous thing about having two chronically ill children, is that a diagnosis such as diabetes wasn’t frightening. In fact it was just another part of her life that we had to manage. The good news that came with this diagnosis- was that there is so much research around diabetes, there is so much support. This is a known condition and there is a system around treating it.
Both of my girls had steroid induced diabetes post liver transplant, so injections, finger pricks, checking sugars and adjusting insulin, both long acting and short acting wasn’t new to us. Steroid induced diabetes wasn’t permanent however, and this was. Different hospital's teach different ways of treating diabetes, and counting carbs was the way we were taught when diagnosed. This was new to me, so a learning curve had begun for both Jenna and myself.
Having grown up in the hospital system Jenna had become so anxious around needles, more in particular around canula's, but being injected with a needle every time she wanted to eat was less than ideal. Jenna had a nose tube for a year or so, before a gastronomy was inserted permanently into her stomach.
For an active outgoing child who loves rock climbing this was challenging to say the least. (A gastronomy is a feeding option directly through the stomach, also known as a button.) This lasted for a little over four years, and was removed only less than 12 months before she was diagnosed with diabetes.
Jenna has suffered nutritionally for a very long time. Pre and Post transplant she was vomiting several times a day, she was fed through TPN (nutritional liquid directly through your veins) and had open bowel surgery when her bowl had collapsed. She had been so nutritionally deprived that her body was like a skeleton more times than once. The last thing any of us wanted was for her was that her now healthy appetite be effected in any way. I don’t know about you but the thought of being injected by a needle every time I wanted to eat, wasn’t appealing at all. Necessary but not appealing. The instructions at the hospital were to try to eat at a time frame, and then to wait before injecting again. But if you were hungry and injected again and again this is called insulin stacking. The thought process around this is that you don’t want to continue to keep having insulin one after the other in the risk of dropping your blood sugars too low which can cause a hypo. Hypo's can become life threatening. For a child as complex as Jenna, I knew that if she was worried about the injection it would have the knock on effect of lowering the food intake, which would result in weight loss. For most children this is not dangerous, for Jenna we were facing another gastronomy being inserted, that she had worked so hard to have removed in the first place.
If she wanted to eat... I wanted her to eat.
If you know me personally you probably know I am not too afraid to speak my mind. This I take with me as an advocate for my children whilst in Hospital - if she wanted to eat I wanted her to eat, and if this meant insulin stacking then this is exactly what we would do. We would learn to manage the insulin stacking to support the nutritional need of her body, as the consequences of us limiting when and how often she could eat, were just too great.
She slowly learnt again how to use the finger pricker, and how to calculate carbs, how to squeeze what tiny bit of stomach she had, and how to inject. When I could see the hesitation in her- I completely understood, and wondered how this time I could make it easier. Then I remembered something we had learnt from an incredible clinical psychologist.
Break it down into time. I used the whiteboard in the hospital room, and performed some maths...
I asked her how many hours in one day, she quickly worked out it was 24… How many minutes in one hour- I continued to write on the blackboard and she continued to answer… 60, and how many second in each minute? 60…
So there are 86,400 seconds in a day- each day, every day.
I turned to her and asked her… ‘How long do you have to inject for once the needle goes in?’ She answered… ’10 seconds’….
I continued… ‘How many times do you eat a day?… Lets say 7 or 8 times a day…. sometimes more sometimes less, so let's go for 8 times a day.’
8 times of 10 second injections is a total of 80 seconds… ONLY!!!
so 86,400 seconds take away the 80 seconds per day, leaves you 86, 320 seconds every day to do whatever you like.
How you would like to spend THAT time?
I saw the twinkle in her eyes... Lego, friends, movies, writing, reading, playing guitar, walking, stop motion, climbing, travelling, playing... the possibilities became endless.
We slowly started shifting our mindset
from how much time, and how hard this could be, to gratitude. Grateful for all those involved with making this a 10 second injection. Grateful for having a clear diagnosis. Grateful to the nurses and doctors, and educators who were around us to support us. Grateful to those with this condition previous to us so they could lead the way. But also grateful there was a treatment plan so we could continue to live a life.
To continue to reach for the stars, or at the very least.... to get lost in them...