Here I am, unusual hour to blog for me (4am) but what is sleep?!
I am so heartbroken for Beau. How unfair he has this, lying fast asleep in the night with his Mum putting a straw in his mouth so he can drink juice to survive. This, of course(!) was after I’ve been awake half of the night trying to bring down a huge high that I caused, giving him McDonalds for dinner.
Usually I have the McDonalds bolus right but I waited to give him the full amount (it’s a lot of insulin!) as he went low after eating it and my original bolus. Anyways I was supposed to give him the rest (only 15g of carbs) later, but we went to bed and he was a steady 8.
Well, he went to about 20 and then after a couple of corrections went down to 2.5. Needing 2 treatments to get back up. Hence why I am here. at 4am.
I have been meaning to blog all holidays but it’s been a busy time!
Beau started school 2 weeks before the holidays! It’s going so well! I am so happy with how the transition has gone and his wee team around him!
We worked really hard to make it go as well as it could and I’m proud of us and I’m super grateful for his school and the wonderful people caring for him each day.
I did ask them if they would possibly fund an extra half hour per day and they (at the moment at least!!) have funded an extra hour a day! So we are so very lucky!!!!
It’s taken Beau a while to settle in, of course he knew no one from preschool or anything, not to mention often having adults around him! And being super thoughtful taking it all in. There have been tears on drop off each day but we know that he is fine just after and that’s the main thing! He has made a wee friend now, which has made it that much better!!!
There have been a few blips with things at school (in relation to diabetes), and there are bound to be more, but we are working in really open communication so I am really happy and obviously always there to help.
We had clinic on the last Friday of term – our favourite endocrinologist and nurses – yuussss!
Beau’s HbA1c had improved since last time, and is in the ALMOST non-diabetic range, so that was amazing news!!!!!! We are so proud of him. And of us. Nothing needed changed in his pump settings so that was great! The team there are so wonderful, they really celebrate us and Beau and tell us how hard we are working and how great it is. It is so nice to hear that and gives us a boost as always, it’s nice to hear kind things but also – this is our son’s life!!!!
The last few weeks have been a bit tiring, I’m not sure really what’s going on. Earlier this week, Beau had 5 lows in less than 20 hours. Which isn’t like him. In fact, one was during the day and he was quite unwell with it, Crying and saying he wanted to go home (we were on our way home) and saying he felt sick. He sat with a bucket for quite a while but thankfully came back ok. The phone hadn’t alarmed me and he’d eaten and been bolused and I was driving so had absolutely no clue he would be low!!
The lows overnight recently have also been mostly requiring a double treatment, this is exhausting as you have to stay awake to recheck him again each time, so it’s like usually more than 45 mins I’m awake for.
I get so fucking heartbroken, like just then. He’s just so beautiful. I am so angry he will be dealing with this for the rest of his life. I know I’ve said it before, but I am glad to take the burden away for the few years that I can for him. But in 15 years, he will have to sort out his own lows in the night (hopefully by then he will be hypo aware!!) and also HOPEFULLY the technology will have caught up to prevent lows. Or high highs like this last few hours have been. This is why this handsome young boy needs a queen bed, for his Mummy and him 💙
Our next pump step (in about 18 months) should hopefully be able to be a closed loop system with the same pump brand he uses now. This will mean we need to pay more money for a CGM for Beau to wear and that will talk to the pump and reduce the insulin when he is heading low, and put more insulin in to his body when he is heading high!!!!
I can’t wait!!! Hopefully we might get on a trial for it too!
Also, the news any parent of a child with any medical issues likes to receive – URGENT pump recall! Argh! But it’s not urgent as Beau’s is still working ok but we will be sending it back for a replacement as it has a faulty part. Bloody petrifying to get that email when travelling last week!
He’s awake now, crying for me – better go xxx
I still can’t get over the prescription sizes!
Our GORGEOUS boys on Beau’s first day of kura!
Isn’t he the most beautiful thing you’ve ever seen?!