Pump Failure!

5 weeks in – and we encountered our first pump failure.

In typical fashion, it happened at the most inconvenient time – just as I parked up at work after dropping him off at pre-school. I then had to drive all the way back to pre-school in rush hour traffic to find this:

Insight Pump M24 Error Code

Google to the rescue! Once I’d double checked what needed to be done with the pump failure, I had to undertake a full set change. At pre-school. Surrounded by curious toddlers. Brilliant. His last set change had been less than 12 hours ago!

We’re incredibly lucky that pre-school are willing to keep spares of everything, including insulin, in their fridge.

So set-change completed under the watchful eye of about 20 toddlers – we have never hidden anything from the children at pre-school and the staff, and I, encourage them to be involved and ask questions. It’s all about raising awareness and curious minds etc.

I think this helps William, too, as he doesn’t feel isolated or excluded, and he gets to show off to his friends. At this young age, we feel that it’s important that he doesn’t grow feeling different – even though he is.

Fingers crossed this set change will last more than 12 hours and we encounter no more pump failures.

DEXCOM FAIL!

Yesterday his Dexcom sensor decided to give up on Day 10. Yes, this is the recommended usage period, but we have been lucky with the last two and they have lasted 20+ days.

Me being a last-minute Larry only ordered his sensors a day previous and we had no spares in the house. WOW, how quickly do you become dependent on the technology? I felt totally naked not being able to see his numbers remotely and even pre-school said they felt like they couldn’t let him out of their sight all day.

A generous person from the Type 1 Community kindly let us have a sensor whilst we are waiting for ours to be delivered. They were such a lifesaver and shows how the community tries to look after one another when favours are needed.



A Quick Update (March 2019)

So it’s been a while since I’ve blogged; but as most of you understand – life just gets in the way sometimes.

It’s been an eventful March so far!

William’s rash seems to be finally clearing up; all that is left is a few scabs from where he scratched a little too much. Currently, we have taken a break from using any lotions, potions, creams or gels to help stick or remove his cannulas and Dexcom patches.

From a Facebook recommendation, we have reverted to using baby oil in the bath, which seems the best way to go at the moment. We may try the new silicone spray once everything is fully healed.

The last 24 hours have been very busy with a Dexcom and pump failure!

Sunday Walk-in

William had a slight rash on Tuesday, but we didn’t take much notice. Sometimes he gets these things and by that evening it seemed to have settled down; but boy was I wrong!

I lifted up his top today and was greeted with, what can only be described as, a stinging nettle rash across his stomach and left arm. They seemed to be fairly localised around the areas of his Cannula and Dexcom.

He’s been using his Dexcom for about 40 days now – so pretty sure it’s not a reaction to that adhesive but to something else. The only thing we can think of, and the nurse agreed, was a reaction from the Zoff adhesive remover.

Zoff Adhesive Remover Wipes

Taking a look at the ingredients I can see why:
Dipropylene Glycol.
Methyl Ether.
Isoparaffin.
Aloe Extract.
Benzyl Alcohol.
Fragrance.

I think we didn’t see this reaction initially was down to us using them in the bath – so any leftover residue was quickly washed away. Any other removals were done in the living room of an evening with a quick wipe down afterwards.

From today, we’ve been prescribed a new remove called ‘Appeel’, which does not contain any alcohol as it’s fully silicone-based. This is much kinder as alcohols tend to be harsh and dry out the skin.

We are going to try this and maybe just stick to using this new remover in the bath/shower – fingers crossed this will stop these bad reactions.

Nighttime Lows

So, from the severe hypos of last week to the constant borderline night-time lows of this week; oh, how nice it would be just to have a simple week without any hospital visits, worries or issues.

I suppose it all adds to the “fun” and no day is ever the same, and even if it is – you start to worry that something is wrong when everything is so right!

Decom App Showing Low Alert
Dexcom App
Hypo Alert

We had a perfect night on Friday due to setting his TBR to 0% for several hours following getting fed up of him hovering on the boundary and the million Dexcom alarms that come with it. YES – I understand he is 3.5 and he is technically “hypo” but he has done this before and stayed there for a good hour. Those Dexcom users amongst us will understand how loud and annoying the alarms can be…and yes, I know they’re that way for a good reason.

Anyway, I digress, this 0% TBR seemed to do the trick very well and kept him at a perfect target range from 11 PM all the way through to breakfast. As you do with anything that works I thought I would try this again the following night…

Fail! By 11PM he was high! He’d gone up to 11+mmol/L (180+mg/DL) so disabling the TBR was out of the question and, instead, I had to give him a correction to bring him down. This did work and, again, he stayed in range for the duration of the night.

Since Thursday, Will’s bloods have been pretty amazing, which, I think, may be down to using AAPS a little more in an open-loop and manually adjusting Basal and TBR’s when prompted. Only time will tell if this is working as expected.

AAPS First Timer

So took the plunge into building/using Android APS over the past few evenings when time has allowed and oh boy…. what a complex beast it is.

AndroidAPS actually working but so many things wrong.

Don’t get me wrong now its built, installed and working with a virtual pump i could repeat the process in a quarter of the time and have a good understanding on what i’m doing and why. I’m sure the real fun part will be using it in a open loop with a physical pump and then fine tuning the settings and going into a fully closed loop

The major errors i had resolved around Nightscout integration, understanding calculations (ISF and Basal rates) another added fact is this was being all configured on a second phone as not to disrupt his existing phone used for his Dexcom readings.

Once the NS profile was setup correctly (plenty of orange warnings) and the AAPS setup was completed it has started recommending TBRs which when we have the pump i will start administering manually.

Insulin to carb ratio (I:C) [g]
Used existing carb ratios or 1u:20g as these seem to be working well and have been for the past few weeks. We do get the odd day where he is high/low but put these down to him having 29g of carbs and still being dosed for 1U, Its so hard to correctly dose when 0.5U is the only option available. Im sure this number will change to something more granular after being on the pump for a while

The Insulin Sensitivity Factor (ISF)
Again with only giving him 0.5u increments of insulin this is hard to work out correctly, following the guide here, he is approx having 10 units of Insulin a day (long and short) which calculates as 8.33 meaning every unit of insulin will drop his blood sugar around 8.33mg/dL

Basal rates [unit/hour]
William is currently on 3.5u of Lantus per day which as a per hour unit works out at 0.15~ rounded to 2 decimal places.

Pump Day!!!!

So pump day was yesterday and what an eventful afternoon!

The morning wasn’t so great; he had very high blood sugars through the night and into lunchtime following advice to only give one unit of Lantus when he usually has 3; and we had anxieties about how much insulin to give so as not to mess things up for the afternoon.

Pump training wasn’t as intense as I imagined – but having to keep a 3-year-old occupied and take everything in was nearly an impossible task.

We nearly saw some tears when it came to the cannula (same as the first Dexcom insertion) but he soon forgot about this because he told me: “orange juice will make me feel better”. Then when it came to doing a test bolus, he got to eat two chocolate biscuits which, naturally, he found really easy.

I think we have taken everything on board but I’m sure time will tell, especially when it comes to set change day on Thursday and then every 3 days going forward.

After the training session, we all went for a cheeky Nandos to celebrate and test out the pump – or Mandos as Will calls it. All I can say is: WOW! It was so much easier to be able to do multiple Basals (starter/main and then again for dessert) and much less messing about with him and asking him to sit still and wait etc.

By bedtime, he had totally adapted to having his cannula and pump attached and was excited to go back to pre-school and show all his friends – as well as the staff.

It was mainly positives that were taken away from the day; fewer injections, more accurate dosages; TBR’s & ability to set varying basal/bolus rates depending on the time of day etc.

BUT…The big BUT is that we have to go back to finger pricks for meal times. The way the Accu-Chek Insight works means it requires a blood sugar reading before each bolus, this in itself is not an issue. The issue is that this BS reading cannot be manually entered and has to be entered via the meter – therefore, a huge frustration as we can’t simply enter readings from the Dexcom. My wife is unimpressed and feels the Dexcom is now a bit of a waste of money… but I know things are coming that will end finger pricking once again.

There is a rumor that a new App may enable this option but, at the moment, all we can do is wait.

Pre-pump weekend

So, today is Friday which means it’s only 72 hours until we get the pump fitted and we are all very excited. William has been telling his friends and teachers at pre-school all about it and how he’s looking forward to fewer injections and more cake!

Over the last few weeks, we have been getting him used to his pump belt so that having to wear it 24/7 on Monday won’t come as a huge shock to the system.

Week one; no luck at all with him wearing the pump belt and he would only wear it on his head. Finally, with some encouragement and bribes (dextrose and fuzzy felts being kept in the belt) he agreed to wear it during the day. Not wanting to push our luck – we stuck with this for a week.

The second week; again no luck with him wearing it overnight; so further bribes this time came in the form telling him he could put some toy dinosaurs in it. He kept it on overnight and has yet to take it off. Win!

Yes, it does get in the way at times (especially when it comes to him going for a wee) and I think I will be ordering a spare soon (should any wee related accidents occur).

A big thank you to Tracey who runs Pumpalicious, the belt is brilliant and the Paw Patrol design makes it even better for him to wear. I’m sure we will be ordering many more to match his interests and TV shows as he grows up.

What are these numbers?

So it’s now been ~10 days since we first started using the Dexcom G6 and what an insight this has been.

10 days of stats that mean absolutely nothing and, if anything, make trying to understand T1D even harder! Out of the randomness of the past 10 days, I have noticed a few things. He has:

  • 2 or 3 unknown hypos a day
  • Long high periods overnight
  • Very sensitive to insulin and sugar

It seems that he was having around 2 or 3 hypos a day that were getting missed but, obviously, now with the Dexcom, these are being treated correctly. We tried decreasing the insulin at meal times and he then went the opposite way into the mid/high teens. What doesn’t help is that due to being on MDI we can only give 0.5u increments of insulin which seems to be able to drop him from 18 all the way down to around 2.5 in 60 mins or less.

Low Blood sugars, 4 in less than 6 hours.

So looking forward to the pump now! Not saying this will be the cure of all cures but having the ability to micro-dose in 0.01 units will be amazing! Along with being able to correctly dose for carbs, we will also have the added bonus of being able to set TBR’s – should he look to be going low or high.

Again this should help tackle his high periods of overnight highs; we can put him to bed on perfect numbers and three hours later he is as high as a kite…. only to come plummeting back down as quick as he went up. Knowing that giving a correction in the night would result in a nightmarish situation of night-time hypos.

Overnight High

Dexcom Day

So after giving in and waiting for the individual funding process/decision from the NHS Trust. We have decided to self-fund Dexcom for a few months to get a feel for it and get some numbers together to further help with the individual funding case with the Trust.

First impressions are really good, very simple clear instructions, very user friendly app which guides you through each step of the insertion and configuration.

William on the other hand was far from impressed about having this thing attached to his arm. No tears or major pain from the insertion just a little moan and manly complaining about what was now semi-permanently attached to his arm, nothing that a bribe of Calpol couldn’t resolve.

We are now two days in and hes accepted the fact that this is now part of him and will be attached to him for a very long time; i suppose its like a tattoo or piercing, slightly annoying and weird at first but you soon forget that its actually there.

The thing he has yet to adjust to is no longer having finger pricks to check his blood sugar levels, its been part of the routine for the last 6 months its hard for him to understand why we have stopped all of a sudden.

The Numbers at the moment are shocking, it seems like the week we decide to set this up is the week we are having numbers from hell even just looking at the times we would manually check. Hes just bouncing from high to low back to high. Some of these would have been missed without and has made me realise how many hypos/hyper’s we have actually missed especially as he has no awareness of what his bloodsugars are doing.

Williams blood sugar for the past 24 hours

We are trying not to micromanage or make any major adjustments over the first week to try and get a real understanding of what his blood sugars are doing especially around meal times and when he is at pre-school. Its making me see the real benefit of a pump too being able to temporary decrease/increase his background insulin when needed to keep his BS more consistent and i’m sure ill go into more details when we get the pump.

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