I thought I'd sit down and write this, not only for me but also for Riley. I have so many family & friends that have no idea what we go through every day. Ok it's not all bad and yes we can control it and actually live with it everyday but knowledge is the key and understanding this will help.
We were all excited that day as we were getting our family photos taken, I had been slack and thought it was time we had professional photos done of the 5 of us. My great friend Peta Eyeington was the lucky one chosen and she did an amazing job. Once the session was over we all headed back to Peta's place for a drink and the little ones went for a swim (or in Cohen's case a drown lol, he was fine).
Once we got home I noticed Riley wasn't himself infact I had been noticing he was losing weight and also drinking more then normal (all of which are signs of T1) it was also very hot so I put the extra drinking down to the weather. Mother's intuition made me get my glucose tester out and actually test him. Well that's a moment I will never forget, when that number came up I knew in my heart that life was about to change forever. Normal blood glucose is between 4-8 but Riley's was 20 which is very bad. I rang GP access and they made an urgent appointment for us and we headed into Newcastle for our appointment. By the time we got there Riley's bsl had hit 25 so straight to The John Hunter we went. Once we got to the hospital more tests were ordered and Riley was so brave, even laughed when they put in his cannula and the blood squirted everywhere.
About 2am the next morning Riley was admitted into the children's ward and it all started. We met so many great people and we still have a fabulous support team and some of the best doctor's in Australia for diabetes.
Riley soon learnt how to inject himself and test his bsl, he totally amazed me how he took this all on board. He didn't like the injections but he knew he had to have them. Lucky for us when a child is first diagnosed they are meant to have injections for 6 months but due to our situation we were given an insulin pump straight away which was great. This means that Riley doesn't have to inject himself 5 times a day but has a needle in him 24/7 that slowly drips insulin in and he also has to give himself extra at meal times. This needle still needs to be changed every second day but he would rather that then the alternative. Here is a photo of the needle he has in him 24/7.
A typical day involves counting every little carbohydrate that goes into Riley's mouth, you would be surprised how many things are full of carbs. Then we need to work out how much insulin he needs, thankfully the pump takes away alot of the hard work. So once he knows what the carbs are he then tests his bsl and the machine blue tooths the results across to his pump (got to love technology) and he puts in the number of exchanges (15g of carbs per exchange) and the pump works out the amount of insulin that goes into him. Then he can eat. This is everytime he eats not just breakfast, lunch and dinner. I challenge you do this for a day and see how you go. It's hard work!
Then there are the highs and lows. Highs can last for days especially when sick and lows can also be dangerous. Highs bring back the thirst and fatigue and the lows make you feel like crap, you shake, sweat and in the worse case you can have a fit and become unconscious which means another needle or a trip to the hospital in an ambulance. So balance is the key!
Ok all this can be overwhelming and you are probably thinking wow I didn't realise this is what it's like. That's a good thing as it means I have done what I set out to do. All this is very scary but lucky for me (well not really) I'm also Type 1 diabetic. Everyone thinks this is a great thing as I have the knowledge but let me tell you it's very different when it happens to your child. I know what it feels like to be high & low and I can treat myself quickly but I had to learn to read Riley and notice when it was happening to him as he too needs to learn. This involves testing Riley during the night (2am to be exact) a few times a week and when he is sick or his sugars are low this can become every 2 hours 24/7.
Riley can live a normal life! He can play sport, ride his scooter etc but he needs to be aware of how he feels and to always have some quick acting carbs on hand if he has a low (jelly beans or juice).
If you got this far I say a BIG THANK YOU!!!! We are very proud of our brave little man and I'm also very proud of my other 2 boys as they are also aware of how Riley is feeling and what he goes through.
I'll leave you with a photo of Riley on that day he was diagnosed, he is much better now and has put on 6kg which is fantastic.
A special thanks to the diabetic team at The John Hunter Hospital (Newcastle) for all your support!
Dannii
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