A short story by Michelle McKenna
“Diabetes you say. At least it’s manageable.”
As a parent to a young child who has type 1 diabetes, I’ve heard the above sentence many times and I can confirm that it is manageable, but maybe not in a way you would think. To put the management into context, I would put it in the same league as a formula 1 team. Not convinced? You might have the impression that it’s all about the driver at first glance just as you might think diabetes is just a few injections, which is partly true. But there is a team of ‘many’ in the background analysing data, strategising what the next move should be and quickly responding and correcting unexpected incidents. For our formula 1 family that is exactly what we do – everyday!
Let me introduce you to our team, it’s not quite the same in size as formula 1, but it’s just as slick (some days).
The team consists of, team principal, data analyst, strategists and mechanics, that are all interchanged between mum and dad throughout the day with a backup team on the end of the phone at a moment’s notice. They are also known as the NHS Diabetes team. Apprentice and ‘team principal in waiting’, is the driver’s big brother aged 7.
Just as the Formula 1 team would use telemetry to analyse the driver’s data such as speed, breaking and engine temperature. We use a glucose monitor called Freestyle Libre, (other CGM’s are available) soon to be upgraded to the Libre 2 but this won’t happen until next season as the regulators have deemed it as an unfair advantage for this season’s race.
The driver also has an insulin pump that sits in a belt on her waist and is attached to her via a cannula. The team can deliver insulin remotely to this device with limited interruptions.
The short story I want to tell you about is how our formula 1 team has fine-tuned its setup during lockdown. Are you sitting comfortably?…
Our team doesn’t stop. We had been in lockdown on and off for twelve months and have been managing type 1 diabetes like a boss. There was no school to travel to or activities to attend. The main things to do were to go out for one walk in the day and run around the garden in-between home-schooling. For some this became dull, but for the strategists in the team they took this situation as a golden opportunity to assess the insulin’s performance in the driver. They set the pace for a solid two weeks with a strict routine of exactly the same foods and activities every day to see how that might affect the stats and the driver’s performance. It gave interesting results and confirmed that no two days are the same no matter what they did.
On this particular day the driver started early as she always did and unlike some celebrities, she didn’t feel like she had to earn her breakfast, she had already done that just by waking up on a good glucose number. The team who manages her levels had also earned their breakfast as they’d been analysing the data overnight and tweaking the high and low sugars to ensure the driver woke up with a good number. The team principal usually takes the first libre scan and finger prick test of the day and this day was no exception. The number was good. It was in range. Everyone smiled because it meant they didn’t have to wait too long to eat breakfast. If it was too high, they would have had to wait longer until the insulin was well and truly in the system. If it was too low, there would need to be a quick fix of sugar, such as jelly babies to bring levels up. However, the driver would need to be retested fifteen minutes later and they sometimes found themselves in quite a ‘hangary situation’. Today, there was no delaying. Insulin could be delivered, and breakfast could be prepared.
The mechanics ensured the weighing scales were at the ready and that there was a full supply of batteries for the scales in case it failed. The scales ensured the carbohydrates in the food were measured so it could be matched to the data that had been put into the pump. The driver liked a selection of breakfasts, however on this occasion the strategists decided it would be ideal to convince the driver that porridge and toast would be a good start to the day. They had looked at the data and were trying to avoid a sugar spike during mid-morning that sometimes came after consuming other breakfasts. It was the fourth day in a row that this was on the menu. You could feel the tension was beginning to build in the air between the team and the driver.
“My lovely how’s about we give you a little extra honey on your toast?” One of the mechanics suggested to the driver to help appease her. She folded her arms and scowled as she thought over her decision and within a few moments her face began to soften, and the tension dissipated as quickly as it arrived. Much to the team’s relief the driver had accepted those conditions.
Once breakfast was over the day continued smoothly. The family went for a walk, had some snacks and returned home. The team principal and data analyst continued to monitor the driver’s Libre stats throughout the morning via a number of scans. During the walk they had noted that they had managed to avoid the breakfast spike which was a great small victory, and a few high fives were had. However, it was short lived. Only thirty minutes later they were caught out at the speed the insulin was having on the driver’s body. Or was it something else causing the drop? They had prepared and accounted for the walk so it couldn’t have been that. They checked the data again and it showed them the dreaded red reading. It was a low of 2.1. Interestingly the driver seemed to be unaware that she was having a hypo because she was having too much fun playing.
“Two jelly babies, stat please.” Shouted the data analyst to the apprentice. The apprentice ran to the supply cupboard and retrieved the required jelly babies. The driver was now becoming aware of their condition. The team could see she was feeling very hot due to the redness of her face and her trying to take her sweater off. She also looked a bit disorientated and kept looking over her right shoulder for no reason. The apprentice quickly ran back to the garden where the driver was sitting more slumped against the team principal. He helped with giving the sweets to the driver. She wolfed them down with gusto without really enjoying them, but knowing at some level that she needed this to help her. Once she’d finished eating them, she moved closer to the team principal for a big snuggle and rest whilst the sugar did its work. The team decided that it was a good time to have a quiet moment to give the driver some time to get back on her feet.
“Mummy?” asked the apprentice, whilst everyone relaxed. “I was just thinking I know the jelly babies are medicine, but would it be okay if I could try one. Please?” the apprentice asked in his sweetest voice. He didn’t need it for medicine purposes, but he sure liked them for treat purposes.
“Okay, but just on this occasion. You can’t have one every time the driver does.” The apprentice was beaming with delight. His timing had paid off and he then spent the next five minutes deciding which colour he wanted.
By the time the apprentice had finally finished choosing and eating his treat, the driver was starting to get back to her old self. Within ten to fifteen minutes, she started playing as normal. It was close to her next meal and the team knew she would need refuelling soon. But due to the jelly baby intake they had to wait twenty minutes or so before checking for glucose readings. If the readings were taken too soon it could cause chaos because it wouldn’t be an accurate number as the sugar would still be working its way around the system. It meant that the pump meter might not work out the right amount of insulin because it would be based on an incorrect number. This is the balance of science and art that the team are always working on.
After thirty minutes of trying to keep everyone distracted from food the team principal shouted, “She’s looking good we’ve hit 5.8. Now let’s get the food measured and hit her up with some insulin.” The driver was delighted to be eating, as was the team. They were all so hungry. Despite the team principal and strategist sneaking into the kitchen for secret snacks.
Once the food was eaten, the driver was back on peak performance and went out to the garden with her brother for one last run around. There were swings to be swung on and slides to be slid on. It was a beautiful afternoon for it. And the race was soon coming to a close. The team could feel victory in sight. What could possibly go wrong.
“We’ve been monitoring the driver.” Cried out the team principal. “Call the pit stop team they need to be prepping. I think we have a malfunctioning cannula.” It was a major incident that doesn’t happen very often but when it does it can’t be ignored. It meant there was no insulin getting into the body. Everyone was put on high alert.
“Little one you need to come in. We have to check your cannula.” The team principal called out to the driver as gently as possible. Knowing this was a very sensitive situation that they were dealing with.
The driver was fuming at the team! She didn’t want to be taken in for a pit stop. She was on a roll and having the time of her life. But it was no use fighting with the team, they needed to bring her in to assess the damage. She reluctantly came in and allowed them to investigate and the team’s suspicions were confirmed. It was a broken cannula. The pit stop team rushed into action like a well-oiled machine.
“Cannula – check” One mechanic shouted to the other as they confirmed the tools they needed. “Insertion device – check”.
Before the driver knew it the cannula was inserted into the insertion device and pressed onto the skin of her lower back. Within seconds it was attached (1.8 seconds to be exact). The driver felt a little scratch and expressed her annoyance with a little cry and a stamp of the feet. But she knew it needed to be done. The tubing from the pump was swiftly moved from the broken cannula to the new one. A few settings tweaked on the pump, the old cannula wiped off and the driver was out of the pits. Although still fuming that she’d lost precious seconds of playing. The team suspected that the driver’s press conference later on that night might not be too complimentary on this occasion. Regardless the team gave a huge sigh of relief. The driver was going to finish the race and win it. They decided to put the Champagne on ice that night for at least a few more days as they needed to analyse the data for the past month and discuss with the wider team on the phone to assess what further changes might need to be made to the insulin delivery. They headed to bed pleased with the results and prepared to do it all again tomorrow.
I write about our experience of caring for an amazing child who has type 1 diabetes as well as writing children’s fiction. This article is also featured on Medium
Email me at: email@example.com