I can’t even remember where I was up to with the last blog post, but I do know that since then, we have had our first Christmas with Diabetes.
In the lead up, I hadn’t been thinking about it really, trying not to OVERTHINK it I mean, just shut it out! lol
We just had my Mum here, and KW’s Dad, us and the boys. It was lovely! Perfect! I wasn’t worried about anything that Beau might eat as we were prepared to let him go for gold and give him any insulin corrections (extra injections) as needed.
Funnily, on Christmas eve one of the Grandparents had asked if Beau could have something and I said no. Cooper was there and he said ‘But he can have treats tomorrow, that’s what the Dr at the hospital said. Birthday parties and Christmas are ok to have treats!’ Yes, my darling boy – you are right!
Anyways so on actual Christmas day we tried to give Beau a normal breakfast. Over the week leading up to Christmas he had been quite low which (in our 3 week journey) was quite unusual but he has a runny nose and wasn’t eating as much as normal. So he didn’t really eat his breakfast, then he had some scorched almonds, I mean to be honest, I couldn’t tell you what else he ate at what time! It was so crazy to not be worried!!!! Quite a relief!!! Better not get too used to it though!! We just kept scanning him and he actually spent most (or much!) of the day, in the range of 4-8!
Yay!
Although, I forgot to mention that on Christmas eve we had a hiccup…
The CGM (Continuous Glucose Monitor) disc in Beau’s arm lasts for two weeks and we had heard that the readings were quite unreliable for the first 24 hours. So on the 23rd we put the new sensor on his other arm, and continued to read off the old one until in ‘ran out’ on the 24th.
The morning of the 24th we took the old disc off and it revealed quite a red hard lump in the centre where the sensor was in his arm. It was infected! This could explain the low/random readings! Maybe even his runny nose?
I emailed a picture to the Paeds Diabetic team and then called them an hour or so later and they were arranging a Dr at the hospital to give us a script for antibiotics. Phew! Panic averted.
They were really back pocket antibiotics to use if it became worse as the next 2 days were Christmas and Boxing Day so nothing was open. I went to get the script and had 2 completely contrasting conversations with 2 staff at the chemist.
One was with the girl behind the counter who said at least Beau wasn’t 21 when he was diagnosed, like her friend who had to stop eating all this food. (Quite a myth actually, Beau’s diet hasn’t changed too much as yet, we are just ensuring (OR TRYING to make sure!!) he gets the right amount of insulin for the food he is eating.)
The second was with the pharmacist, who may have overheard the previous conversation but somehow brought up the Hb1Ac number and how we needed to bring that down to keep a close watch on his eyes and kidneys. She said ‘It’s all very well being diagnosed with Diabetes at 2, but if you have problems with your eyes and kidneys 30 years later, you’re only 32! But if you get diagnosed at 30, then you’re already 62 when having these issues.’
I found her great to talk to but I must admit when I walked out, I began to panic… this is all on us! WE have to get that number down. It is KW and ME. We have to work so hard to try our best (which we are doing!) to do this now for Beau so that he can live as normal, happy, healthy life as possible.
I guess at this point, the realisations keep happening. Like I said a few posts ago, this isn’t a short term medication thing to fix it. It is a disease with no cure. I guess you, the readers know that. And I know it too, but when it’s my beautiful baby boy with an incurable disease it can sometimes get overwhelming!
But he is great, he has been great. Such an incredible wee boy just getting used to his new normal. Getting woken up in the night to eat some of a candy cane then toast, while watching Moana on the iPad is just becoming something that happens every couple of nights.
We are tired. We are managing this together, really being such a good team, but man, we are tired! (I know I have previously covered this, but a warning – I will still repeat it!) getting up to check him a few times every night is ok and we do share that part a bit, but the treatment means being awake for about 45 mins and that can be hard!
Tonight we had quite a significant low in the early evening. He usually has them during the night, so we can’t really see the symptoms as clearly as we have to wake him up! But we gave him insulin before dinner and then he didn’t eat his dinner (of course!) then we gave him toast, which he didn’t eat (all these bad toddler habits we learnt the hard way with Cooper a million years ago that we haven’t done in years and years! But we need Beau to EAT THE CARBS WE SAID HE WOULD EAT!!!!!) and then a wee bit of banana, so then he crashed. He was following me crying, then I sat on the floor to cuddle him and his eyes started to shut so I quickly scanned him ‘LO’ it said, so I skin pricked him ‘2.8’ I needed to get some candy cane into him.
Meanwhile, Cooper is standing there ‘Why does Beau get a candy cane and I don’t? You love him more than me. He always gets the treats and you are always in bed with him.’ Not now my Coops, not now. I know it must be so tough for you buddy and we are all trying our very best but obviously it’s not good enough right now. My darling big boy, we are so sorry we will make it up to you when we can, in the meantime, stop being a punk!
Anywho, Beau was crashing hard and it was freaking me out, he got sweaty and so droopy. He was crying and moaning and asking for chocolate, so then I gave him a wee bit before getting him onto something more substantial (shapes then a yoghurt!) he had dropped so hard as he had had the insulin on board for about an hour with hardly any carbs to match. Even though we didn’t give him a big dose of insulin. ARGHHHHHH.
He had a shower, which he didn’t like at all, then he came right and got lots of energy right on bed time! It’s so bloody hard to get this right!!
I can’t say enough how wonderful the Paediatric Diabetes team at the hospital are. They are just incredible. When I upload Beau’s data from his scanner, they call to discuss any changes etc or just to check in etc, and they are so nice! They keep saying we are doing so well, and it means the world to hear that! I don’t feel like we are, but maybe at times we are!
When I looked at Beau’s data yesterday he had about 800 readings in the right range, about 450 below it and 450 above it. Not too bad I guess, still early days and there is room for improvement!!!!!
He is still in the ‘honeymoon phase’ making some of his own insulin, so tonight we have dropped his long lasting insulin again to hope that we stop the overnight hypos (lows). The injections are measured in units, and you can give them in half unit increments. Beau is so small, and I guess producing some of his own so his wee jabs have not much at all in them! The long lasting insulin was 4 units when we left hospital and now we are trying 2 units tonight! The others vary depending on food eaten, but it’s usually between 0.5 of a unit to 2 units before meals. They are such teeny tiny amounts it’s crazy!
We are off camping on Sunday just for 3 nights. I’m not a camper, we are totally unprepared (but will be prepared for anything Diabetes related!!!) so I am quite anxious about how that’s all going to go! At least we aren’t going too far from Christchurch, so the hospital is close-ish. Wish us luck!
Our gorgeous little candy cane lover on Christmas day!
