The eagle has landed.
On Tuesday we finally got our hands on a CGM to play about with. We only have it for 5 days but it will get us a feel for them & to see if it is a route we want to go down in the future. I’d read many blog posts about the Navigator so knew what to expect. Sadly as a 5 year old Emily hadn’t. And as with anything new D-Related it scared the life out of her.
Emily still shows her displeasure at cannula changes, this can be in the form of shouting while we put it in to all out war, kicks to the face & thumping. It just depends on her current bg and general mood.
So I knew we may have a battle to get this CGM Sensor in. May need a but of brute force to just pin her down and get it in her side or so I thought. No chance, upon getting to our appointment we were informed it would be best in her arm. For the next 30 minutes Emily screamed, got hysterical, begged, hide and swung her arm so no-one could get near it.
The only thing I can liken this to is when Emily has been DKA & needing to have a saline drip in her hand. That’s how worked up she got. And we hadn’t had to do that for a couple of years now.
Eventually we had to strike, as Emily hugged Mummy I pinned her arm in place and our DSN stuck down the sensor & inserted it. We were not popular anymore!
I needed to bundle her into the car & get her to Toys R Us quickly, this felt like it was about to get expensive. In the end it wasn’t so bad, a scooter & some bracelets for £30. I felt slightly relieved. This is her outside Toys R us insisting on a sling from a scarf because I quote ‘It’s worse than a broken arm’.
Anyway back to the Navigator, walking around Toys R Us it was blank, awaiting the beep for our 1st calibration. Off it went, nice & easy to test and then hey presto, we had a blood reading on the screen. We were up & running. The OCD had started. Don’t go out of range, stop running off. Not easy in a toy shop!
We get home and put another pump belt on & leave Emily to look after it. Despite the whimpering the sling is now off and she is happy to play at home, albeit with a bandage to keep it covered up. Instantly I can see a problem. That lovely little arrow seems to love pointing up. All the time. Even for Emily it’s high. I can see I was already loving and hating the new influx of information.
She had insulin active, not much but a bit. So I though let’s play, I worked out a correction dose and put it through. For the next 2 hours it was still going up! What is going on? Everything had be counted correctly, why it is not working? The tiredness was creeping in, it was only 6pm. The blasted alarm was ringing every 5 minutes to notify high BG. I was tempted to throw that handset out the window. It took 2 more corrections to get her back into range. Her usage today was well up on usual. Her cold had to be coming back. We’ll work on that tomorrow I thought, he BG was in range. It was low 7’s. I was happy. Finally we could get some sleep.
WRONG!! Within 2 hours the alarm was going off… How was this even possible? This is what I woke up to
It was mocking me, teasing me with sleep. It was just before 2am. It was going to be a very long night. In fact I didn’t get back to bed. I ploughed correction after correction in and by 8am the best BG we had was 9.8. TBR was on, but now ramped up to 120%.
Lunch reading again was high. Time to increase all food bolus too. That was it. Magic, it just clicked. The chaos was calmed. Her bloods were looping up and down for food and back into range. Something like this would have usually taken days to unravel. Trial and error to get her bloods correct. With the Navigator it was all there, easier to see the trend and fix immediately. I’ve saved myself days of sleepless nights. You didn’t say it had to go back did you?
I went to bed at 10:15, that doesn’t happen in my house, it was weird. No TV, just time to catch up on sleep, I even celebrated with a tweet proudly saying I’m going to bed. But this is the part none of you saw… 15 minutes later…
ARE YOU KIDDING ME!! I was fried, I was ranty, everyone was asleep. There was no-one to hear the expletives coming out my mouth. It was red mist, I was worked up but why. It was only a warning. She wasn’t yet hypo. I reduced the TBR to 110% and waited for an hour. Sitting next to Emily in her room staring at the Navigator constantly. OCD at its best. But it held level. By half 11, an hour after everyone thought I was asleep I could finally go back to bed.
Normally I’d have not had a warning. I’d have tested at midnight, found her low, woke her up, forced haribo or hypostop in, gone made a drink, retested at 2am & then hopefully got to bed. I earned myself an extra 2.5 hours in bed. I need this in my life 24/7
A CGM is the most amazing and frustrating bit of tech I have come across to date. It undoubtedly would improve Emily’s control. As discussed before it would especially help parents who are taking care of a T1 as we can’t feel the ups & downs.
It would mean more sleep for us. More stability for Emily & more confidence for her school when she is there. For now this is all a bit of a pipedream. We will apply to the CCG for funding, explain our situation like everyone else does. But I don’t hold out much hope despite how erratic Emily’s levels seem to get.
But there is a glimmer of hope. In August we are due a pump upgrade, we are discussing a change to an Animas Vibe to encompass self funding the Dexcom CGM if it is not NHS funded. It would not be easy but with some family support we may be able to manage it. After just 48 hours I can honestly say you cannot put a price on having this at your disposal.
If you get the opportunity to trial a CGM bite their hand off! It will give you an entirely new outlook on your diabetes management.