We are on the pump!

It’s been over a month since my last post! This year has already been going super fast and getting back into work added onto the pressures of T1 plus a new pump – wow I haven’t even caught my breath since diagnosis 4.5 months ago!!!!

Our ‘Pump Start’ days were great, in the building opposite the hospital. Extremely full on, well they were all good and we coped really well but the learning made me super exhausted! The pump rep and diabetes nurse were great, and at times we had other visitors from the team over at the hospital too. Plus Mum and Beau twice…

Beau came in on the first morning and we hooked the pump on him, March 12th at about 10.30am and we haven’t looked back! He was used to it pretty much straight away and copes so well with such a large ‘extra’ permanently attached to his tiny wee body!

That’s what I find hard. The fact that now he has the Libre sensor in his arm, with the Miao Miao device attached to it, and the needle in his upper bum with the tubes attached to the pump, which sits in a wee belt thingy. So many attachments on my little baby’s body! I find that heartbreaking, in fact at the moment it’s what gets to me the most often.

So at the end of Pump Start week, we were due for our first ever ‘Site change’ where we have to fill a new reservoir with insulin, put it in the pump and pre-fill the tubing and then insert the new needle in his bottom. This has to happen every 3 days, and it has to be successful before you take the other site out.

Well, of course this was the day of the horrific terrorist attacks in Christchurch! I didn’t know what was going on that day and I had Beau asleep in the car so we drove over to wait at school to get Cooper a bit earlier than usual. Then on the way I found out, just that there had been a shooting, nothing like what eventually unfolded!! But there was nothing I could do as I didn’t know how long the school would be in lockdown for, and we live on the other side of town so I felt I had no choice but to wait there. Outside school. My school, my home away from home where my son was. I knew Cooper was super safe and being well looked after and Beau and I had some great company in some other Mum friends I have from school but I was getting a bit concerned about what supplies I had, as I had just packed our new Diabetes Kit!

I had the stuff I needed, apart from an alcohol wipe!!! (Which is fundamental for the needle insertion!!!!) I had a few snacks and water bottle and low treatments if needed. Luckily one of my friends had a wipe in her survival kit so that was that stress slightly relieved. Thankfully we got home at around 7pm after work meeting etc and we were able to sort it out cleanly at home!

It’s these horrific events where you are stuck and it is crazy out of the ordinary that we need to be extra prepared for always now.

Beau is coping really well and the pump is amazing. Sometimes he feels a bit of pain in the needle part on his wee bum. He is as ‘teched up’ as he pretty much can be at the moment, so we are lucky. He is lucky. The amazing thing about Beau’s pump, is that it gives such tiny doses of insulin which is perfect for his needs right now.

We have had our fair share of sickness around here lately, and a few weeks ago, Beau was particularly unwell with a cold. Randomly, he started needing next to no insulin. When we ‘bolused’ (got the pump to give him insulin to counteract the carbs he was eating) him, he would go low. So we stopped bolusing him, and reduced the ongoing amount that constantly feeds through the tube to him by 30% For a week! It was literally like he was non-diabetic! It was amazing, but also very unsettling as we had just been getting our head around it all and then the pump, and now this.

The team said it has been known to happen before but it wasn’t common, and they did try to tell me that he did still have Diabetes, even though I kept saying he was cured!

Over a week later, Beau had diabetes again. Obviously he always had it, but it returned to ‘his normal’ diabetes. No real rhyme or reason, just maybe that the cold virus meant that his body wasn’t able to absorb carbs that week. I was worried about him so much that week and what was going on, I wish I had just been able to enjoy it. By the time I had begun to, he was back to needing more insulin again.

Anyways, I feel like this post has just been a whole lot of gobblygook being randomly put down, and if it makes no sense to you – that’s ok. I have missed writing, and am enjoying typing as fast as my wee fingers will go! Nice to have a break from school, so my brain has allowed enough time and thoughts to write something again.

Since Beau had his ‘non-diabetic’ 10 days ish, he has been getting rather high at night, with his BGLs (Blood Glucose Levels) and I just know that his hbA1c is not going to be as good at our next clinic appointment. It’s hard not to feel disappointed about this, as we had such an amazing result the time before last. Last time, it had jumped up slightly, but still in a really good place…. Eeeek it’s like failing a test… I’m not good with that stuff. You guys know how hard I am on myself already. Every time Beau’s levels aren’t within 4-8 I blame myself!

Another great thing lately, is that since he is on a pump, KW doesn’t have to go to preschool anymore to give him insulin at lunch time. There are 3 amazing teachers there who are trained to bolus him for his morning tea, lunch and afternoon tea! Every single thing with any carbs that Beau eats now, we have to bolus him on the pump for. Whereas before when he was getting the injections, he would get an injection just before breakfast, lunch and 2 before dinner (plus extras if he was high.)

One thing that has been slightly annoying is that with the site being on the bum, if Beau has a larger poo, it can get on the site, which requires a full set change. So this week, Beau had his site changed on Tuesday evening. On Wednesday Beau ripped the needle out accidentally after his bath, scratching his palm somehow on the needle, so needed a new one. Then on Thursday, had a poo explosion at preschool so needed a third site change in 3 days!!!! Poor baby, they are a wee bit painful for him, more so removing the old one.

So, that’s us. Busy. Tired. Thankful. Carb counting. Bolusing. Loving our wee man.

Beau with his pump belt on showing a bit of his site and also his Libre sensor and Miao Miao attached on his arm xxx

And these, because these are just some of the exquisite faces of my beautiful blue eyed boy <3