24/7

As it is now the school holidays I have a spare minute to blog and had already been thinking of what I would write. Something positive, I thought. All my blogs seem to feel slightly… negative (I guess that’s part of the writing therapy for me, and I don’t make anyone read them so I guess, read at your own peril if you don’t like negative things lol)

So usually, we muck along ok day to day, doing the work of our son’s pancreas. Remember, Beau’s BGLs should be between 4-8.

Mostly Beau’s BGLs show up as green (perfect) and sometimes yellow (just out of range) on the phone graphs… the daily/nightly grind is relentless. We calculate food, we bolus accordingly on the pump, we watch what happens, see how much insulin he has on board and if we need to give him more, or is he dropping low so do we need to treat him etc.

Other things we need to do are we have to calibrate the phone readings with what the actual finger prick readings are. The Libre sensor readings are there too. So at times, there are 3 different readings on what Beau’s BGLs are at that time (although the sensor and phone are 15 mins delayed) so we need to take that into account too.

Along with that, every 3 days (sometimes less) we also need to change Beau’s needle site in his bottom and the insulin cartridge in the pump as well and every 2 weeks change the Libre sensor in his arm that takes the readings, and that the MiaoMiao attaches to, to send readings to mine and KW’s phones.

On Saturday Beau went to a birthday party for one of his friends from preschool. He had so much fun, and perhaps I was a little too light on the bolusing (with different foods and party foods it is more of a guessing, estimating game rather than a measuring and then multiplying that measurement with the carbohydrate factor game) so it can be hit and miss. That’s ok usually as these aren’t regular occurrences.

So Beau was high after the party. Saturday night, was ‘site change night’, and it also happened to be ‘sensor change night’ so there was a lot to do, alcohol wipes out, skin prep wipes, adhesive remover wipes, insulin cartridge, new reservoir, new needle and tubing and all was sorted.

Beau is such a bloody champ. He gets the iPad when it’s site or Libre change day so he’s happily distracted and most of the time it works a treat!

Blows my mind that kid. It’s really incredible to witness how brave he is day to day.

Anywho, he’s pretty much been high ever since. He took SO LONG to come down on Saturday night, it was about 3am!

Today upon waking the phone said he was 8.9 which is quite high to wake on! So I finger pricked him and he was actually 4.8 – much more normal to wake on. He had his breakfast, where like every day I measured and multiplied then bolused to those measurements and what his BGLs were.

Then I was getting all 3 of us ready to drop him off at preschool, looked at the phone and he was 19! Hoping that the phone was still way off, I finger pricked him. 18.2 eeeeekkkk. Why so high?!

He had almost enough IOB (insulin on board) to come down (I gave him as much as the pump said he could have) but he wasn’t coming down. So of course I couldn’t send him to preschool until I had brought his levels back down.

Cue – running races around the house with Cooper, jumping on all the couch cushions, running again! I also changed his site early in case the other one wasn’t working well, as he had been unusually higher since Saturday. Although the site looked fine, I needed to know it was all good so just started again!

Finally after many more finger pricks I could see his BLGs dropping. 18.2 – 14.0 then finally 10.2. He could go to preschool an hour after first intended (late anyways, as it is the first day of the holidays!)

So Cooper and I dropped him, I chatted to his AMAZING teachers then Coops and I had a coffee and cake date. Delish! Such fun having wee dates with them!

We went to the supermarket and for 15 mins didn’t check my phone…

Beau hadn’t had any morning tea as we had arrived at preschool at 10.30 and he didn’t want any. So… now he was LOW! The phone was saying 2.7 and still tracking down! Eeeek. So his teacher called me, finger prick was 3.6 which is better, so she treated him with mentos and jellybeans and 10 mins later he was 6.3! Phew, crisis averted. Till next time lol

Now, I can see on my phone he is a very happy green 7.3. I may finally actually be able to sit down and start my work now!

It’s just a lot. It’s full on and 24/7 and if I seem tired, or vacant, or busy or haven’t been in touch, then… this is why!

I think how on earth do we manage? People, with all their issues, there are children out there with cancer – how do their parents do it? Disabled children? Children with behaviour issues? Sick partners? It is so much to bare! When parenting ‘normal healthy’ children is a lot and exhausting there are so many others working SO hard behind the scenes.

The children themselves are such treasures.

Cooper is such an incredible human being! All he wants to do is be silly, make people laugh, have fun, play rugby, talk about rugby, laugh, say toilet words, crack me up with his awesome sense of humour, play with his brother scaring him and teaching him things, he’s super bright and will listen (when he wants to!!) and be observant and thoughtful and questioning and GOSH that guys memory is insane!!! It takes a special boy to be a wonderful big brother, particularly to someone who takes so much extra time and attention away from him. Coops’ new world is full of ‘What are Beau’s levels?’ ‘No, we can’t have that as Beau is too high.’ ‘Beau has the iPad now as he’s getting a site change.’ ‘Mummy’s tired as Beau and I didn’t have a good night.’ etc. It’s a lot. He deserves me to buck up my ideas!

Beau lights up the darkest of days and nights with his amazing snuggles, his crack up sense of humour, his super cute lispy voice, his thoughtful observations, his gritted teeth psycho side, his hair playing hands, his love for books and puzzles, his animated voice, his fabulous pretend play skills and his love for his family and friends.

I knew the minute he was born that he would complete our already amazing and lucky family in the most perfect way, and he sure has!!!

Last night, the boys wanted to sleep together in Cooper’s bed and stayed that way all night. In the morning I asked if they had a good sleep, Beau did. Cooper said ‘No, cos Beau was just snuggled up to me all night!’ heheeee so precious….

Beau’s phone now says 8.4 and rising. Poor baby must feel a bit crappy to go from so high to so low then climbing back up again.

Happy school holidays! Hope everyone has lots of yummy coffee in the am, and a wine or 2 in the pm to keep them sane!!