20 months! Jeepers!
That sounds like so long. Or it sounds like not too long ago. And in relation to diabetes I’m not even which way I feel about it. Was it ages ago? Or was it just yesterday? Who. Would. Know.
I am in a dark place right now. I am sleep deprived and sick myself. So my thoughts on diabetes are pretty low.
We had clinic at the start of July and things were ok. Not dandy. Not terrible. Well, kinda terrible but they wouldn’t SAY that. On one of the graphs we have to upload before we go, Beau’s freestyle libre one – it said he was in range 35% of the time.
The endocrinologist said it should be around 70% in range.
Well, not oops, as oops would mean it was a mistake. Which is wasn’t. Obviously we try all the time to have Beau in range. So not a mistake. But what? A bad run? Are his insulin ratios off? Are we not making good decisions in his day to day care?
Well, truth be told. We don’t know. We continue to work hard, day and night to have him in range. We also continue to work hard to just be parents of a 4 year old and a 7 year old, and let our 4 year old diabetic child, be a 4 year old child. Without the ‘diabetic’ always in front.
There weren’t many changes that were suggested after the clinic, but we have changed the things that were suggested.
Somehow, Beau’s HbA1c was still around the same as it was last time. Not great, but not terrible.
Let me tell you, every day and night we make 100s of decisions in relation to Beau’s diabetes. And sometimes, they aren’t the right ones. Other times, they ARE the right ones BUT no 2 days are the same with this stupid disease, so it won’t do what you expect it to do.
Does that make sense?
Here’s an example.
From early on, we haven’t really ever FULLY ‘corrected’ Beau’s highs during the night. The reason being, when we did, the insulin would work TOO well, and bring him down low.
Last week, he was high during the night, so I went in, gave him a correction (not the full amount the pump suggested remember, cos that’s not something we would usually do…) and then he stayed high for the rest of the night, but not high enough to alarm us so we slept through it and didn’t bring him back down. We correct only if he’s 12. He stayed on 10 all night.
The VERY. NEXT. NIGHT, the same thing – he was 12. I woke up to his alarm, went in, and – gave the full correction amount.
What do you reckon happened?
HE WENT LOW!
See! It’s an ongoing battle between making choices like this that can really affect his levels. When his levels are crazy, then I’m imagining he doesn’t feel great. Particularly when they fluctuate from very high to very low.
It’s also hanging over our heads that, you know, keeping him in range as much as possible will hopefully see him develop less/or even better – no complications from diabetes as he gets older.
It’s a lot.
Beau is also ‘hypo unaware’ which means he can’t tell us when he’s feeling low.
Sometimes the signs are obvious, he will start crying and saying he’s hungry. Other times, there are no signs.
During the holidays we went to hang with my good friend and her family for the day. We had lunch and then went on a big neighbourhood walk to different parks. I noticed at the second park that my phone said Beau was 4.4 heading down (the phone readings aren’t always accurate and also they are 15 mins behind actual right now readings from finger pricks)
So I finger pricked him. 2.4. What the fuck. His lowest reading ever. But you couldn’t tell, he had been playing, walking, running etc. In fact, he barely stopped for me to prick him. I gave him 4 skittles and he ran straight onto the playground and climbed up to this super high net thing where he was well above my head.
Honestly, my heart was in my mouth and it was an awful few minutes. He was fine. Happy as, climbed back down himself and wanted to keep going. We turned back for home then and I carried him for a bit, but not too long before he was off walking/running again!
These moments take years off my life, I swear!
As mentioned earlier, I’m not well at the moment and somehow I managed to sleep through last night. This morning I was in the boys room and there was a half empty juice box by Beau’s bed. Obviously, he’d had a low during the night that KW had treated. He said to Cooper and I – ‘Look what I had!’ and Cooper said ‘I don’t get juice that much’ and Beau was like ‘Yeah but I do, cos I have diabetes!’ in such a happy wee tone. I really hope he stays this happy about it. It’s nice for him to feel like he’s spesh. Every time he has a site change or sensor change he gets the iPad, which is another wee treat he enjoys, plus the obvious skittles as a low treatment too.
Beau’s behaviour is another new thing, well not NEW cos, kids! But he can be very aggressive at times. I haven’t yet worked out if there is a pattern with his glucose levels, but sometimes when his levels are high, he can also be quite ‘high’ lol
It’s hard for me to imagine what he feels like in that wee body of his when his sugar levels aren’t very stable.
It’s also very hard to explain to people why we haven’t yet ‘got the hang of it’ or ‘got used to it’ or ‘sorted it all out’.
In fact, 20 months in, and I’m so far not sure that that’s a thing. Because when things MIGHT be going ever so tentatively smoothly, they will change. Which is hard to explain to people.
It’s a hard disease to control. Extremely hard. So hard it sometimes seems impossible.
But, our Beau Richie won’t know that for a while, so it’s on us to keep on keeping on!
Super blessed to have my wee bestie.
Inspecting the needle and tube that was just about to be inserted into his bottom last night ❤️