I need to remember that Ivy has diabetes, it doesn't have her, with our help and support she will hopefully live a normal life, ideally it will be an extraordinary one full of adventure. Like it typically is at the moment, she doesn't know she has this life long, life threatening condition, she just wakes up every day wanting to go and feed the ducks, play with playdough or dance around the living room. Life is an adventure to her and after the last couple of weeks we have had, I couldn't be more thankful for her innocence.
Two weeks ago we experienced the darker side of diabetes, after several days of generally being very low and having had 25 hypoglycaemic attacks in 3 days, Ivy lost consciousness due to one. I had already treated a hypo at 1:20pm, she came up to the safe range and was back to bouncing around and playing, when I asked if she wanted to go to playgroup she leapt straight up and went to get our shoes, so off we went. In the community centre she was happily playing with sensory rice and wanted to do some painting, I popped on an apron, sat her on a tiny chair and after one splodge of yellow paint on the paper she screamed, arched her back and frantically started doing the makaton sign for food; something she does to alert us that she is going low. It wasn't even 2:00pm so I thought she couldn't possibly be hypo again but checked her anyway. Her blood glucose reading was 2.8, anything below 3.1 is classed as a serious hypo. I took her into a side room and thought I'd read her a story after giving her double her usual dose of glucojuice. She slumped on my lap and I called our Diabetes Team to get some more advise for treating these persistent attacks, whilst on the phone to the specialist nurse Ivy became really drowsy and I was urged by the nurse to call 999. Ivy's head flopped forward and when I tried to get her to respond to her name, her eyes rolled in her head and she couldn't focus on anything. Within a few minutes her head was back and she had lost consciousness, we couldn't wake her and she just lay there, to an outsider she looked like she was sleeping. The paramedic struggled to find the community centre and arrived 20 minutes after I had given her the glucojuice, he put Ivy on some oxygen and explained that she may need an injection of a hormone called Glucagon, but they're reluctant to use it on little ones unless they really have to. He checked her blood and she was now 3.8, still in the hypo range but 0.2 off the safe numbers. He explained that he would wait 5 more minutes to see if the glucojuice would still be working, another 5 minutes ticked slowly by but he finally checked again, Ivy's glucose levels had crashed to 2.6, I saw the smallest look of shock on his face before he resumed that calm exterior that medical professionals have, he simply said "she needs the glucagon now, pull her trousers down" he administered the hormone injection, which would cause Ivy's liver to expel all of it's glucose stores and kick start the body, it took Ivy about 10 seconds to come around and she was screaming, scrambling to get the oxygen mask off, I was so relieved she was awake, I didn't even think about what would happen next. An ambulance arrived to take us to a&e, as Ivy no longer had any glucose stores it was important to get her straight there, blue lights and sirens, because she had to eat something. I am sure it only took us 10 minutes to get there but it felt like an hour. By the time we got to the hospital, Ivy was back to her normal self, happily playing, at one point she had another hypo with absolutely no signs at all (diabetes is so bizarre in how it affects the body!). We had her pump switched off for 90 minutes, gave her 2 biscuits and her blood sugars remained normal and stable; a small part of my hopeful brain thought she was cured, sadly not, her pancreas doesn't work how it is supposed to and until there is a cure, that is just the way it is. For the following week Ivy had her insulin intake significantly reduced, her background insulin has been running at 20% of her normal amount during the day, this is the equivalent of her having 0.0005ml of insulin over a 24 hour period! You couldn't even put that tiny drop on your hand! Nobody really knows what has caused this sudden sensitivity to insulin, our consultant said that it isn't uncommon for smaller children to not need as much insulin sometimes. Diabetes requires such a delicate balance of so many factors, some of which are still unknown. Another theory is that she hasn't been absorbing her food properly, due to some kind of virus, leading to a surplus of insulin in her body. Who knows! All we can do is keep checking her blood, pricking her fingers and treating her accordingly, I haven't had much sleep the past few weeks but I don't even care if it means Ivy will experience a little less discomfort.
It will have been 2 weeks tomorrow since Ivy had that awful attack and last night, having studied her stats, we almost hoped that she was returning to normal but then at 3am Ivy woke desperate for a drink, she downed a full bottle of water, I checked her blood...her glucose levels were 18.7! Hyperglycaemia kicks in when blood glucose is above 12, a T1 adult friend likens it to that awful feeling we call a hangover; headaches, feeling sick, being tired, unquenchable thirst.
These are Ivy's blood glucose readings for today. .
18.3, 9.5, 16.5, 16.7, 17.5, 15.5, 18.3 and finally a 7.7 after giving her loads of extra insulin.
She's poorly. A temperature, loss of appetite, crying, bloodshot eyes, runny nose and after waking up at 8am she has been asleep for the past 2 hours, since 12! As if a virus isn't bad enough when you're a toddler, she has to deal with raised hyperglycaemia and feel like she's having the worse kind of hangover at the same time. Hopefully it won't last too long, we will keep her hydrated, keep checking for ketones and of course give her as many hugs as she wants and watch Disney films all day!
A friend of mine recently called Ivy "content" I look at her, and she really is! Despite everything that she has gone through and continues to go through every day, she is the happiest little soul, often in hysterics herself or causing our cheeks to hurt through laughing so much! To those who don't know her, you wouldn't even know what a courageous little girl she is. Our little Superstar. A superstar who recently raised £450 doing her vwey first sponsored walk for JDRF, the Juvenile Diabetes Research Foundation, she walked about 40% of the 5k herself; it took 90 minutes, 2 stumbles, 3 blood checks and some snacks along the way. She crossed the finish line to applause, high 5's and cheers. I could have burst with pride and I cried!
She is amazing!
