Hey guys, this is going to be a long one. I'm going to try and be as brutally honest and in depth as I can and if anyone has any questions post blog please feel free to email me them and I'll do my best to answer them privately.
So my journey with diabetes began 10 years ago now. My eldest son riley was 3 and just started school half days after being in nursery. He was a really good baby, walking by his first birthday, out of nappies at 2, stopped having night time accidents at around 3. Then he started education, he started wetting the bed, getting up during the night, a few nights I caught him in the bath drinking from the bath tap, I told him off and called him a naughty boy, "This is why you keep wetting the bed! What are you playing at? You go to bed with your juice bottle your just being naughty!" I told the health visitor on numerous occasions of his change in behaviour and his sudden bed wetting all of a sudden, she linked it with him starting school and maybe struggling to adapt to the change. It was so frustrating. It went on for about 6 weeks, and then 3 weeks after his 4th birthday, it was his little sisters first birthday and we'd had a nice day, went for a walk and riley was out of sorts, quiet, with drawn, he didn't look very well and had shadows under his eyes, we got home and he seemed to perk up a bit when we got the cake and party food out but after eating his slice of cake he vomited and said he wanted to go to bed as he felt poorly, it was out of character for him so I knew he must of been really feeling rough. So I took him up to bed about 5 ish and tucked him in.
It must of only been about an hour later and i had this niggling feeling in the pit of my stomach that I couldn't shake and went up to check on Riley, he was still asleep so i tried to wake him to see if he wanted a drink or some calpol and i couldn't wake him, i shook him and he wouldn't wake up, i turned his bedroom light on and my little boy was grey, like honestly I'd never seen someone that shade of grey before, he was grey, his lips were a blue colour, he had these awful dark shadows around his eyes and he was limp and suddenly it dawned on me how fragile he looked, like he'd lost weight and was all of a sudden a shadow of himself, I've never been so terrified in all my life. He was rushed to the out of hours doctors immediately, they told us to bring him straight down, within minutes of being there it was like everything was going in slow motion, almost like we were sat back watching everything happening around us in a dream trance being unable to stop it or do anything to help. He was put on a trolly and literally ran through the hospital car park, through the main hospital and to the childrens ward by these doctors, with us trailing behind him in a blur. Taken into this large side room in the childrens ward where they lay him on a proper hospital bed and all these nurses and doctors were back and forth fighting to save Riley's life, he had a drip in each hand and that was the only time he made the slightest noise was when they put the cannulas in, each hand bandaged up so he couldnt pull them out, he was on heart monitors, kidney monitors, he had a catheter put in, he was connected to so many machines, with wires everywhere and nobody spoke, it was just a flurry of people back and forth whilst you stood there numb watching. A doctor came over and said "you do understand your son is gravely ill, he is diabetic and in complete dka" (diabetic ketosis) our son was in a diabetic coma.
How to even process that information, i don't understand, i thought only unhealthy people, or fat people get diabetes, or people who ate too much sugar, Riley ate plenty of fruit never too many sweets, i couldnt comprehend it. "Does anyone in the family have Diabetes?" the doctor asked. "No." It was something I'd very rarely ever heard of in my life let alone knew about. "Has he been drinking a lot lately, weeing a lot, maybe lost a bit of weight?" And just like that the whole weight of the world comes crashing down on you as that little light bulb in your head illuminate, all three, all three. The immense guilt/hate/shame/anger/frustration i felt towards myself were overwhelming, I really didn't know of this disease, never knew anybody with diabetes my whole life, let alone be educated enough to spot the symptoms in my own child. What if he died, and all I'd done was tell him off for sneaking into the bath for a drink of water because his poorly little body was trying to get rid of the ACID in his bloodstream. I felt like I'd failed my baby. Full on ugly crying writing this guys, the guilt tears me apart to this day and i never realised how deep I'd buried it so it didn't hurt.
Riley was in hospital for 5 days, he was on fluids and an insulin drip for 36 hours, within the first few hours of receiving insulin Iv he came around to full consciousness and slowly you could see the colour coming back into his little face and his skin didn't look deathly grey anymore. He was moved out of the side room after 3 days and given a bed on a ward. I slept in a bed at the side of his and was educated by a nurse on how to inject him, I did rileys first injection whilst he slept. I was so so scared of hurting him. It is the most surreal thing having to inject your little boy (I HAD a phobia of needles so it was terrifying to me to have to do this to my BABY) I sat in the parents room with a brew afterwards and just cried. You blame yourself for their illness, as their parent you blame you and your genetics, it was extremely hard to not hate myself during this time and even though i did, it was always simmering beneath the surface because you were just so head blagged with the onslaught of information of carb counting, ratios, hypos, hypers, needle training, gluco pen training, sick day training, ketones, symptoms, there was just not enough time to process my own hate/guilt, you just had to muck on and take onboard as much information as you could to continue keeping your child alive, too much insulin, hypo, coma dead, not enough insulin, ketones, dka, dead.
Even now 10 years on it scares the shit out of me that this could kill them at any moment, that i work my hardest to weigh every morsel of food, to carb count, to calculate every single insulin dose to the exact gram. To be confident enough that if there is an undesired pattern in their readings that i can study them and calculate their new ratios and administer them accordingly. That i have to do this EVERYDAY or my child could DIE. That if my calculations are incorrect and i give them too much, my child could DIE. That one day it will be my child's responsibility to take care of their own ratios and carb counting and they could DIE if they did anything wrong. The weight of that, if i overthink it, is far too much to bear. A parent of a diabetic child i knew, she lost her daughter. She'd got accepted at university and set her wings and flew the nest, taking care of her own diabetes at uni etc, she had a hypo at uni (too much insulin or not enough food for insulin given) She was found dead in her room, with her hypo pen all set up beside her, she felt the low, she tested and it was confirmed, she set up her pen to administer the fast acting glucose straight into the muscle and she slipped into a coma before she could save herself. I'm ugly crying again, i've got snot on my hands, my face, my keyboards wet with tears. Its heartbreaking guys, I can't cope with these fears and these thoughts. I put a brave front on it because this is life, this is our lives, this is my babies normality. I don't want this for them. I dont want this for them. It breaks me. I'm going to stop writing for one night and get back to this another day as i'm struggling to continue tonight.
It's taken me just over a week to come back to this one as I've been massively overwhelmed with Diabetes since I started this blog post about it. Continuing where i left off. 3 years after Riley's diagnosis, Shelby started to exhibit similar symptoms over the course of a couple of weeks, It was a subject i bought up to her father a few time to be shut down. He had incredible guilt from Riley's diagnosis that he hadn't healed from and refused to believe there could be something 'wrong' with another one of his children. However after Shelby had been taken to a theme park by her grandad, he pointed out that all Shelby had done all day was drink after being bought a pack of sweets, so i bit the bullet and tested her blood sugars using her brothers kit and yep there it was, her bloods were 26, which is just over 5 times the normal range. So I phoned the children's ward and took her straight in, she was 4 also. It was an extremely difficult time for me mentally as i now had to accept another one of my babies had this life threatening condition, but now i had to keep two diabetics alive, count two lots of carbohydrates each meal, calculate two different insulin ratios, administer up to 12 injections per day and finger prick them up to 20 times per day. If i overthink the sheer workload of diabetes that i have to do day in day out, my head literally falls off, it's something i'm massively struggling with at the moment. Whist Shelby had knowledge of diabetes through watching her brother, she's a very emotional child and couldn't understand why she still had to inject when she got home, she presumed that because she went hospital and they gave her injections there, that she was cured, it was extremely tough as a parent to get her to understand and accept that this was her life now, when it was something that was breaking my own heart too.
My reasoning for writing this blog stems from a hospital admission a week ago the day after shelby had spent a night at her fathers, her bloods wasn't cared for ass they should be and they had been high for an undesirable amount of time which had resulted in ketones building up in her bloodstream. The normal ketone level is 0.0-0.1. Shelby arrived back home at 6.2 (60 times what she should be!) vomiting and weak. The hospital admitted her immediately after a quick phone call from myself, She was on ward and hooked up to an insulin drip and fluids within 15 minutes. They were wonderful with her and within the space of 24 hours everything was back down to normal and other than being exhausted Shelby suffered no lasting damage.
Diabetes is not something i talk about regular as to me, its just the normal, this is our life, why would i feel the need to broadcast it when it's not something i even think about as its second nature to me. But after Shelby's admission I am struggling emotionally for the first time in 10 years with diabetes and i feel increasingly overwhelmed by the sheer responsibility i have weighing on my shoulders day in day out. This is just an example of a typical day for me/us with diabetes.
8am - Test bloods, carb count breakfast, administer insulin for breakfast. Rileys ratio 1-3.5 shelbys ratio 1-6.5
10:30am - Retest & snack 10g carb snack, if over give insulin, correct if needed. Correction ratios Riley 1-2 Shelby 1-3
12:30-1pm - Test bloods, carb count lunch, administer insulin for lunch. Rileys ratio 1-3 Shelbys ratio 1-6.5.
2:30-3:00pm - Retest & Snack 10g carb snack, if over give insulin, correct if needed. Correction ratios as before.
5:30pm - Test bloods, carb count evening meal, administer insulin for evening meal. Riley's ratios 1-3, Shelby's ratios 1-5.5.
8pm - Retest for lanctus, Riley 21units, Shelby 14 units. Correct if need, ratios as before. 1 biscuit as supper, no more than 10g carbs.
11pm - Retest before i go sleep to ensure bloods are a normal level before going to sleep.
If bloods are below 4 at any point this classes as a hypo (low sugar) and is to be treated with fast acting sugary carbs for example 3-4 jelly babies, then retest after 15 minutes, if blood sugars are still low, repeat until bloods are over 4 then give a 10g slow release carb, such as a bisuit or a small pack of mini cheddars.
At the moment i have to test Shelby at 2-3am as her lanctus ratios have been changed due to night time hypos, so at present this is the standard procedure for me until the night time hypos stop.
Meal Insulin Ratios eg: 1-3 so this means for every 3g carbs they need 1 unit of insulin, so if they were having 30 grams of carbs they would need 10 units of insulin.
Correction Ratios eg 1-2. So 1 unit of insulin will bring blood sugars down by 2 numbers. optimal range of blood sugars is 4.5-7.5 so if they are 9.5 on a ratio of 1-2 i would give 2 units on top of their meal time insulin to bring them down to 5.5.
It is advisable not to correct between meals as insulin has a 4 hour life span which hits its peak performance after 2 hours, hence the need to test 2 hours after every meal. If i were to test 1 hour after a meal it wouldn't be a reliable reading 1) because their meal insulin dose wouldn't be fully in their systems yet so if i was to correct at this point thinking they hadn't had enough insulin, the insulin doses would cross, resulting in a higher peak spike which could then cause a rapid drop in blood sugars/hypo.
As if all that information isnt enough to make your head fall off. I then need to take into account any physical activity they may be doing that day and adjust the insulin accordingly (usually by 10% so if they eat a meal after playing in the park say and they need 15 units for their meal, i take 10% off that so they would only need 13.5 unit) the other way of doing it, is to give an extra snack instead up to the amount of 10g carbs.
Then you have to take into account how stress, hormones and puberty can affect blood sugars too. Then there are sick day rules, so that if they are poorly and vomiting and unable to eat, you still have to administer insulin to counteract any ketones in their system from being poorly or dehydrated but the ratios on sick days are different from their normal ratios. SO... If ketones are below 0.6 use their normal ratio. If they're between 0.6-1.5 ketones you then have to give 10% of their average daily dose of insulin. If ketones are above 1.5 you then have to give 20% of their daily average dose of insulin.
So this is all going on, whilst being a mum. This is our normal. And I guess I'm writing this to explain to everyone that what you see with me as a mum of 5 is just the tip of the iceberg so to speak as underneath it all, I'm absolutely working my arse off, like a duck on water, there's always something going on underneath it all. My heads always full of carb counting, ratios, meal planning etc etc as well as being an average mama of 5 and keeping my kids healthy and happy without making a big deal about the diabetes side of things and accepting that it is just life for us.
The pictures below are Shelby in ketosis, as you can see she's very pale/grey looking with shadows under her eyes. You can tell as a diabetic mum just by looking at them when something is wrong. As you can see 24 hours later she's her perfect healthy self after being on insulin and fluids. This is our normal. This is TYPE1.
FOR FURTHER EDUCATION.
TYPE1 IS INCURABLE
TYPE 1 IS WHEN THE IMMUNE SYSTEM ATTACKS ITSELF AND KILLS OF THE PART OF THE PANCREAS THAT PRODUCES INSULIN.
TYPE2 IS CURABLE WITH A HEALTHY DIET AND MEDICATION
TYPE 2 IS WHEN YOUR BODY DOES NOT PRODUCE ENOUGH INSULIN FOR ITSELF FOR VARIOUS REASONS
SIGNS AND SYMPTOMS TO LOOK OUT FOR IN CHILDREN ARE BELOW ALSO.