Tag: Travelling

What have I learnt after our second weekend away since T was diagnosed with Type 1 Diabetes?

Preparation is key and expect the unexpected.

Diabetes Kit…

Let’s start with what we packed for our 2 night trip (just for diabetes):

• Glucose and ketone monitor
• 2 x spare insulin pumps
• 1 x spare Continuous Glucose Monitor (CGM)
• 2 x Fast-acting insulin and pen
• 1 x Slow-acting insulin and pen
• Glucagon pen and gel
• Chargers for omnipod reader and iphone (CGM reader)
• Spare dextrose
• Adhesive remover
• Hand sanitiser

You may think that this is a bit excessive for 2 nights away, let me assure you that it wasn’t and for once, I am very pleased that we were so well prepared.

Rome

We are lucky to only live an hour away from Rome (by train) and as we have been living in Italy for 6 months now, we decided to give a weekend trip a go.

We were aware that the trip probably wouldn’t be without it’s stresses, but it was probably a bit more eventful that we expected.

Before heading to the train station, we had a quick snack and pump change stop, we were excited and ready to go.

Omnipod 5 insulin pumps last 72 hours, so it should last the weekend. Great timing, or so we thought.

As you may be aware, Italy seems to be the carb capital of the world. Don’t get me wrong, I love carbs and to me a meal without carbs, is not a meal. However, guessing the amount of carbs in a bowl of pasta or a massive pizza is just hard. That’s even with the carbs and cals app (which is a life saver).

We made it to Rome, checked in and went in search of food. As previously mentioned, eating out isn’t something that we do often anymore but we wanted to embrace the food culture this weekend and try and just go with it. First meal out for T = spaghetti with pomodoro. Yummy, he was super excited. Looked great and he wolfed it down, we actually thought that we did quite a good job with guessing the carbs, or not…..

As you can see above, glucose levels were high for such a loooong time. Let me explain for those not used to looking at a Dexcom reading. We aim for levels between 4-10 mmol/L, the numbers that we talk about when discussing ‘time in range’.

Anything above 14 mmol/L (the yellow section) really is high and is when you have to start worrying about whether ketones are building up. T was up there for over 3 hours, the longest it has ever been that high.

Initially, we thought that maybe we had just underestimated the carb content of that pasta.

When it hit 14mmol/L we gave the first correction (extra insulin) and glucose levels just kept going up…. what was going on?!?

After 90 minutes, it was time to check blood glucose levels and for ketones. I’m not sure if you have ever had to wake a child up in the night but the guilt of having to do it to then stab their finger with a lancet is real. When they are crying half-asleep and angry at you. Luckily, T never seems to remember in the morning. Ketone levels were OK, so another insulin correction was given. Eventually after another couple of hours it started to come down but what was going on?!?! We couldn’t have gotten it that wrong, could we?

Saturday morning (minus the hypo – the insulin must have kicked in at some point) started OK. Off to breakfast we went, things were looking good until 11am. Even had the audacity to think that we had cracked carb counting for that meal…. how wrong we were!

We made it to the colosseum, had a snack (which we knew the carb content of) and the glucose levels starting to creep up again….. Out of the rest of the day, he only had glucose levels under 10mmol/L for only 20 minutes. Eeek. There goes our 77% time in range. What was going on? We had promised gelato, did he get gelato, no he didn’t. Did that make us feel awful? Yes, it did.

We walked for miles…. Instead of using the hop-on, hop-off bus that we had paid for, we walked everywhere, in the rain. Walking is usually good for T at reducing glucose levels. We had been told that a 20 min walk can reduce levels by 2 mmol/L. Did they budge, not at all. What were we doing wrong???

Eventually, we gave up and went back to the hotel. It had been hours and nothing was happening. It was time to consider changing the insulin pump. Hindsight is a wonderful thing and now as I write this I wonder why we didn’t change it earlier. We had never encountered this problem though. The pump obviously hadn’t been working.

A panicked call to the diabetes nurses in the UK for reassurance, we had done the right thing and had to wait for the new insulin pump to do it’s job.

It’s safe to say that we couldn’t face eating out again. Off to the supermarket to buy some bits to make a cheese sandwich (T wasn’t happy) and some cucumber (carb counting not needed). He eventually ate 2 hours later when levels were below 10mmol/L. Needless to say, we ended up falling asleep not long after T without any dinner.

It had been a strange old day, on one hand we had seen some amazing sights, how lucky are we, but the underlying stress of things not going our way despite doing everything ‘right’ was epic.

Sunday was a new day…

Played breakfast as safe as we could so that T could get that gelato…. He had it, and enjoyed it. Yippee, mission complete. Despite over estimating carb content, up the glucose levels went. Oh boy…

Skip to 4 hours later and after a lot of walking we finally managed a late lunch in Rome train station. There was a Wagamamas!! That cheered him up and even better, they have their meals on the ‘Carbs and Cals’ app. Levels were looking good. Ironic isn’t it, levels start to look good when you are heading home.

I don’t mean to make it sound quite so negative, we did have a great time in Rome and can’t wait to go back. I struggle with the guilt of having to say ‘no’ to things, especially food. Gone are the days of nipping into a cafe/restaurant for an early lunch when it is tipping it down, instead we carry on with that walk. Food is everywhere is Rome and I can’t imagine how that must feel to a 5 year old diabetic…. Comments like ‘I wish I didn’t have diabetes so I could eat what I want’ gives me some idea though.

I will never stop being proud of how T is managing overall.

On a side note, Italian trains are great! They run on time and you get a seat. Completely different to the UK….

Take away message

Be prepared for anything!

Take that spare insulin pump (and another for luck in case it doesn’t prime). We weren’t expecting to have to change it after 24 hours be there we were.

Phone numbers – take them for your diabetes team for questions/support. We are so fortunate to be under the care of Birmingham Children’s Hospital and they have a 24/7 number.

Carry spare insulin, both fast and slow-acting, you never know when you might need them. I once dropped a vial on the hard floor getting it out to read the name to the GP and it cracked. In the heat of the moment, slips and accidents happen.

Take lots of ketone and glucose testing strips. We went through 6 ketone strips in 2 days….

Most importantly, enjoy the experience (as much as you can).

L x