Feb 2021

Hi again, it’s just me – olddddddd lady Renée…

I feel like I’ve aged a decade in the last week, and it’s not even really Beau’s diabetes related lol but I feel compelled to write because today was tough – in a diabetes sense…

When I last wrote, we had just been to clinic and Beau had had lots of ratios changed and things were going really well!! It means that there are more lows to treat, but not the constant highs.

The lows aren’t great either though, they can be really scary if too low and a lot of diabetics really fear going too low and not waking up etc.

We are lucky with the Libre/MiaoMiao system we have at the moment, we get alarmed if Beau is low (3.9 or under) or high (12 or above – technically anything over 8 is ‘high’ but we don’t correct unless it is 12 or over). So most of the time we are onto it. It doesn’t mean it fixes the situation though.

Many, many times lately, Beau will be high in the evenings, then we correct it (with more insulin) and he won’t come down, he alarms again so we correct again etc. THEN it goes down so fast, and we get an alarm he’s low!!! I would say this happens like at least 4 out of 7 nights.

Holy fuck we are tired. I am tired.

I have started a new teaching year and it is proving difficult to get into when I am adjusting to my new travel time to and from work, my coffee situation, my big boy not being with me at school, trying to make huge decisions on a build all while setting up a new class with my amazing friend and 45 wee darlings.

I feel so very lucky. But so very tired. So very overwhelmed.

I miss Beau. I miss Coops. I don’t see them in the mornings before I leave for school (on the 7 days a fortnight I work) and then by the time I get Beau from preschool he’s often tired and grumpy after having a busy fun day! It’s all a new adjustment and we are getting there, I think. I hope.

Yesterday Beau had a day off because he had conjunctivitis so that was not fun for him, poor wee boy missed his first preschool trip he was SOOOO excited to go on!!!!

Last night he hadn’t eaten much, so before I went to bed I finger pricked him – he was low, so he sleep-drank juice. Tested again. Lower. Fuck. It’s THE WORST when that happens. So I gave him more juice, then actually woke him up to eat a couple of wee crackers and have a milk to better sustain him, and pee as he’d drunken a juice and a milk!!!!

But today, Friday, is ‘Mummy/Beau Day’ where I don’t work and Cooper is at school. Beau and I often do a few jobs out and then play at home, or meet some friends etc.

Today, we did all 3. It was great, busy, but great!

And ALL DAY he was high. Apart from when he was low.

We’ve had this thing come up on the pump a few times now when delivering a larger bolus (amount of insulin) it will beep dramatically halfway through with an ‘Insulin Flow Blocked’ something something.

The fucking thing is, THE FUCKING THING IS…… then the pump SAYS the insulin is ‘active’ as in, Beau has received it, BUUUUUTTTTT you never fucking knowwwwwwwwww. So then he goes high.

So this means a site change usually needs to happen, and then you try to correct the high but again, remember – YOU DON’T KNOW HOW MUCH INSULIN ACTUALLY WENT IN!!!!!!!!!!!

So that happened.

Then all day he was high. And then low. The pump seemed fine and KW said he just unclips it and moves the tube so I did that before attempting a site change – which in hindsight, wasn’t the best move. But I have learnt my lesson.

So. All day highs, not coming down.

Then tonight, we had our last family night for his preschool down at the park with a picnic dinner (which I had COMPLETELY forgotten about eeeshk – such is these busy times.) So I did a site change before we went. Then we went and he had the best time playing with his wee bestie and brother and boy, did he RUN!!! hahaha he ran right down the other end of the whole field!!!! Eeep, luckily his besties Dad biked after them and rounded them up to come back lol. I was so proud, as he’s not usually a runner.

Because we live in Lincoln now, it’s a bit of a drive home (not that far from the preschool side of town) and he was verrrrrry tired. He didn’t sleep but tasted a corn chip and it really didn’t agree with him. He said he felt very sick and he didn’t look well at all. So I got him a bucket and also tested him, 4.1 (ALMOST low) and no ketones. So I had to try to get sugar into him when he looked dazed and sick and not good. Yuck. It was scary but I took him to have a bath and he had some iceblock and perked up in the bath.

Phew.

And now, high again. ARGGHHHHHH.

The see saw is constant. I can’t imagine how his wee body feels and I’m so pissed off at myself for not having his levels more steady. But that’s the tired talking. It’s not my fault. It’s the fucking diabetes.

ANYWHO….

I asked my fave diabetes nurse about the transition to school today, just an FYI for me as before you know it, it will be happening (!!!!!!!!!!!!!!!!!!) and they rang the school and sent the High Health Needs form ready to them and other things to fill out.

So. I guess that’s a real thing now too.

I spoke to the principal in Cooper’s first week about Beau’s enrolment and about how we would have to apply for the High Health Needs funding – basically this is a form to ask for Teacher Aide support to care for Beau and his diabetes while he’s at school.

Obviously I want him to have full time cover.

However, on the T1D parent page, there is a huge discrepancy in hours allocated for different children. Which fills me with anxiety. So I told the principal if the application doesn’t get enough, we’ll have to apply again. (this is nothing to do with the school – it must be the ministry) so I wasn’t having a go at them, just saying that I will not be ok with him only getting 10 hours a week or something. Luckily, she agreed and said that I am his advocate so that’s my job! And that they’d support it, which is great.

So obviously, as the T1D kids get older, they manage more and more themselves.

I can’t imagine that.

Well, of course I can’t. My baby is 4!!!!!

But I am happy for him not to manage it himself yet, as he will have another 90 odd years managing it. We’ll do it as long as we can to save him from as much of the burden of it as we can.

He is also hypo unaware. Which can be dangerous. As in, unless it is the time between breakfast and lunch and his morning tea is late and he complains about being hungry (he is actually low – and hungry) he doesn’t recognise what a low feels like. This is the only time of day that he does. And it’s not always either. If he is busy with his friends and distracted, he has no clue.

So the goal as he grows, is for him to recognise what a low feels like and when one is coming. We often will chat and ask ‘Do you feel low?’ etc trying to prompt him with the language.

But the goal now, is to sleep. The high alarm could be going back off in another hour (I’ve corrected and snoozed the alarm for 2 hours.)

Thanks for being my sounding board. You ROCK xx