A day in the life...

For World Diabetes Day (WDD), and to raise awareness of Type 1 Diabetes, my wife posted on Facebook each time our daughter Janki had an intervention or pump alert. It's not posted and shared to say we're doing great or we're doing badly. Just to show what we're doing.

Here's a copy of that journal all in one place.

One day of one family with Type 1 Diabetes. But mainly one little girl with T1D who's going to get up and do it all again tomorrow and the day after, and yet is strong enough to crack-on regardless.

Oh and Your Diabetes Mileage May (Will) Vary of course :-)

12:01am: Not the best start to WDD - a blood sugar of 3.1 (anything under 4 could be very dangerous if not treated). We have to wake Janki to drink some full sugar ribena to bring her blood sugar up as quickly as possible. Thankfully she’s quite cooperative this time and doesn’t refuse treatment. She’s feeling hungry too because she’s hypo so we get her a biscuit. Try not to think about what this is doing to her teeth.

12:11am Janki’s CGM sensor is still reading 3.3 so need to monitor closely. We might need to wake her again for more sugar

12:26am Basal (background) insulin resumed on Janki’s pump as her blood glucose has risen sufficiently. Phew!

1:46am Sensor alert. Basal (background) insulin suspended by the pump as it looks like Janki’s blood sugar might go low again. We manually override it as the automation we have should hopefully manage things.

3:26am Basal (background) insulin suspended by the pump as it looks like Janki’s blood sugar might go low again

5:01am Basal (background) insulin resumed on Janki’s pump as her blood glucose has risen sufficiently

5:46am Oh no, she’s going down again. Basal (background) insulin suspended by the pump to try and prevent a hypo (low blood sugar)

7:20am Remove Janki’s transmitter from her sensor and put it on to charge. We inserted a new sensor in Janki’s arm last night so will start it up this morning. It takes a while to warm up so we’ll be “blind” for the next couple of hours.
Remove old sensor from Janki’s arm and try to get rid of the sticky adhesive on her skin.

7:47am Switch over to Janki’s daytime pump set up. Basal (background) insulin manually resumed on Janki’s pump. Finger prick blood test: BG 5.7 perfect, thanks OpenAPS!

7:55am Give Janki her approximate breakfast insulin in advance of her eating. Adjust her background insulin to try and prevent a “breakfast spike” in her blood sugar

8:15am Find our what Janki would like for breakfast and weigh and measure out her food. Calculate the carbohydrates in her portion and adjust her insulin to exactly match what she’s eating.

8:30am The transmitter has finished charging. Attach it to the sensor on Janki’s arm and tape it down securely - it will hopefully stay there for the next 6 days! Tell the pump about the new sensor and start the warm up.

9:34am The sensor has finished warming up. Check the raw data the sensor is transmitting to ensure Janki’s blood sugar is relatively stable before we calibrate the new sensor. It looks ok so do a finger prick blood test: 9.3. A little high but not unexpected for this time of day. Calibrate sensor.

9:59am Snack at school is earlier than usual today. We would normally give Janki’s insulin in advance to give it a chance to start working but we just have to go with the flow this time. Deliver insulin for 13g carbohydrate (milk and a clementine)

10:23am Finger prick blood test: 8.6

10:55am Janki’s sensor is reading 9.0 which is still a little high. However, it’s not that long since she ate and she’s been having low mornings this week so we decide to hold off giving extra insulin for now

11:32am We were right to hold off on the extra insulin: Janki’s glucose sensor shows that her blood sugars are taking a nose dive. The pump has suspended her basal insulin to try and prevent a hypo
We get Janki to drink some full sugar ribena as the graph shows this is only going one way…

11:39am Finger prick test as she’s still going down: blood glucose is 4.2. Might be ok (we need to keep it above 4) but Janki’s cognitive function will be affected and she probably won’t feel too good because of the speed of the drop

11:59am Check Janki’s blood sugar to make sure it’s come up: 5.9. Good!
It’s almost lunchtime so will need to think about how much insulin to give

12:10pm Give insulin for 20g carbohydrate about 10 minutes before Janki sits down for her lunch. We don’t know how much she’ll feel like eating today so we’ll need to top up once she’s finished

12:20pm Quiz question for you all: Janki’s having quorn sausages, potatoes and peas for lunch followed by lemon cake for pudding. The carbohydrates in her food come to 62g. Last time she had this meal we gave 30% of her insulin up front and spread the rest over 2 hours: her blood sugars were ok until about 2:30pm when she went low. We also left off 5g worth of insulin because she had PE after lunch.

This week however, they won’t be doing PE but will instead have some library-time, a play time outside and will be erupting the volcanoes they built in class this morning. She also had a low blood sugar less than an hour ago and had a low overnight as well so glucose stores in her liver are probably depleted. Her glucose sensor is currently reading a steady 6.2

How much insulin should we give and how should we spread it?

This is the type of question we have to answer every time Janki eats

12:50pm Janki’s pump has just suspended delivery of her insulin to try to prevent another low. Her sensor is reading 5.3 but trending down. It looks like we made the wrong call on how to spread the insulin earlier 😞

1:06pm Finger prick blood test: 4.7 The trend on the graph has slowed so hopefully the carbs from Janki’s lunch are being digested and converted into glucose so we’ll hold off doing anything for a few minutes

1:29pm Finger prick blood test: 7.5
A good result and the pump has resumed the background insulin. We should probably put in the 1.5 units of insulin (representing about 1/3 of Janki’s lunch) that was cancelled earlier as well - after all she did eat the food! However looking at the trace from Janki’s glucose sensor, it looks like the rise might be slowing. We decide to hold fire before putting anymore insulin in because it seems like she’s having a low day.

2:14pm Finger prick blood test: 8.0
Hmmm, do we put the 1.5 units of insulin in or wait and see? Exciting volcano eruptions to come which could well send her low, especially as it’s a bit cold outside. We decide to wait a bit longer

2:54pm Blood glucose: 7.0 Looks like it’s starting to head down. Janki has netball from 3:30pm so it’s probably a good thing we haven’t put the insulin in. That’s a 33% reduction in Janki’s mealtime insulin requirements this lunchtime. Without her glucose sensor, we would have given the calculated insulin amount, and Janki would probably have needed to drink half a pint of ribena this afternoon 😱

3:30pm So I forgot that netball is cancelled this week 🙄 and Janki’s going for a play date with her best friends. It doesn’t matter too much though as excitement and activity levels will be on a par with netball.

Her sensor is reading 8.5 when I collect her from school but her teaching assistant tells me it’s reading a bit higher than actual blood glucose. Janki’s been given a yummy snack along with her friends but I have no idea how many carbs it contains (maybe 20g?). She also wants to walk (probably run!) with her friends back to C’s house. I give a bolus for 5g of carbohydrate for now and will do a blood test when she gets there so I can calibrate the sensor. I’ll top up the insulin then.
It turns out it was a good job I didn’t give all the insulin as Janki only ate about 1/3 of her snack, saying her tummy is hurting 😕

3:45pm Janki’s pump suspends delivery of her insulin as her sensor has detected that she may go low. I give her some milk (5g carbohydrate) to drink as there’s quite a bit of insulin still active in her body.
Janki’s not hypo at the moment so we don’t need to bring her blood sugar up too quickly; we just want to curb the drop and give her a buffer for the excitement of her play date which is likely to drive her glucose level down. The sugar (lactose) in the milk will release more slowly than the glucose from something like ribena

3:55pm Finger prick blood test: 6.0 Great! It looks like the milk has done the trick. Calibrate the sensor

4:40pm Janki’s pump has resumed her background insulin. Her sensor is reading a steady 6.9 as she goes upstairs to play in her friend’s room. She takes her medical bag up with her so I can monitor her levels from downstairs while I enjoy a cup of tea (thanks Nightscout)!

5:20pm Janki’s pump has suspended her insulin again to try to prevent a low blood sugar but I manually override this as she will be eating shortly.
We’ve learned from experience that “fresh” insulin makes a difference to managing the post meal rise in Janki’s blood glucose level so we want to avoids gaps in delivery this close to meal time unless she is imminently going to go low.

5:40pm Pizza for tea 😋I calculate the carbs in Janki’s portion and consider how best to spread and deliver her insulin. Her sensor is reading 4.9 which is great for going into a meal: her blood sugar will rise when she eats so if she starts off high it’s only going to get higher! (We really don’t want it to go too much above 8 )

Pizza is a tricky meal to manage because it’s high in carbs but also high in fat. The fat will delay the digestion of the carbs so there is often glucose being released into Janki’s bloodstream as much as 6 hours after she’s eaten. It can be tricky to match the insulin to glucose release for this type of meal because the insulin reaches it’s peak about an hour after it’s delivered, then tails off over about 4 hours. If we give too much up front, the insulin will act before the carbs come through and Janki will have a hypo.

To add to the complexity, we’ve been wondering if Janki’s insulin to carbohydrate ratio might need adjusting as she’s been going high in the evening the last few nights, so I need to consider whether to put in a bit extra. However this is offset by the fact that she’s been on the low side all day and we never delivered 1/3 of her lunchtime insulin.

Thank goodness we have the glucose sensor so we can see the movement in glucose levels and make adjustments if we need to - either by bringing forward or putting extra insulin in if she’s going high; if too low, pausing delivery or giving extra food/drink if we’ve given too much insulin or delivered it too soon.

6:48pm The end of the play date and Janki’s pump has suspended her insulin again. She’s always a bit sad and tries to delay when it’s time to go home but she’s being brilliant today and has her coat and shoes on. A quick look at the graph tells me she’s there’s a chance she’ll go low but I should have a few minutes. Do I test and wait it out if we need to treat, thereby delaying our departure, or do I trust the sensor, keep the momentum going and try and get her in the car and home (3 min drive)?

Before I can make a decision, she’s out the door with her friend so I say a hasty goodbye and go along with it, hoping to load Janki straight into the car. However she’s starting to exhibit her hypo symptoms already - I find her on the swing when I get outside and she refuses to get in the car. Janki can sometimes get very emotional and uncooperative when she’s low so I have to tread carefully to avoid upsetting her. I use my best powers of distraction and manage to lure her into the car after a minute or two with the promise of a biscuit (she feels incredibly hungry when she’s hypo).

6:58pm There are some roadworks on our way home and we’re in a queue at some temporary lights when Janki’s pump alarms to tell me she’s hypo. She’s eating her biscuit and I also hand her a part carton of ribena to drink. She guzzles it down, draining every last drop. A glance at my watch shows me her graph and I can see from the shallowing slope that this probably isn’t too severe a low in terms of numbers, but her symptoms and behaviour tell me that she’s clearly feeling it this time.

7:13pm Thankfully Matt is home when we get in. I give him a quick update and leave him to get Janki upstairs while I try and work out how roughly many carbs Janki had in the car with the biscuit and ribena as I didn’t get a chance to measure them. I think it comes to about 25g - 30g: we would normally treat a hypo with 10g of fast acting glucose so she’s had more than enough and will need some insulin to avoid going too high. Some of the insulin for Janki’s pizza was also cancelled when her pump suspended so we’ll need to deliver that at some point too.

Her sensor is reading 4.1 but it is rising. We resume the background insulin on her pump and deliver 10g for now.

7:39pm Janki’s ready for bed but we need to change her cannula and insert the new one into a new site on her body. We have to do this every other day.

Ideally I would have done it before she ate this evening as occasionally it can get kinked or hit a nerve or muscle as it goes in. This can be very painful and can prevent the insulin being delivered properly. If we insert the new cannula before a meal, a rapid glucose rise would indicate quite quickly that there’s a problem. We’d have to put in a new cannula but would hopefully spot the problem before bedtime.

However, I was reluctant to disrupt her play date earlier. Janki hates it when she has to stop playing with her friends so I can deal with her diabetes care - I don’t blame her either! So we’ll have to keep our fingers crossed this evening that the cannula insertion goes ok.

As is her routine for cannula and sensor insertions, Janki gets to watch something on YouTube Kids to distract from what we’re doing.

7:48pm Time for some more ribena 😔 Janki’s blood glucose had been climbing but is now back down to 3.5. We treat the hypo and she also has a weetabix with some warm milk as she’s really hungry again. I calculate the carbs she consumes. The complex carbohydrate will hopefully sustain her blood glucose levels for a bit longer than just the ribena alone.

We know from experience that the pizza carbs will start to come through soon too, and we haven’t yet delivered all of the insulin for that. The trick will be to manage the rise once Janki’s asleep - if it gets above 10 it can take many units of additional insulin to bring it back down, especially this side of midnight.

We leave the ribena as free carbs but give insulin for the weetabix and milk. We hold off delivering the remaining insulin for the pizza for now.

8:00pm We switch over to Janki’s overnight openAPS pump set up and she and Daddy read her choice of poems together before bed.

The overnight set up will adjust Janki’s background insulin through the night - just as we do manually, but much more frequently than we possibly could. It relies on Janki’s glucose sensor so only works if the sensor is tracking well: we still need to respond to alarms, do finger prick blood tests and treat low or high blood sugars through the night.

9:17pm Janki’s glucose sensor is reading 8.3 and her pump alerts to warn us that she is going high. It looks like a slow rise at the moment. The overnight pump is connected to Janki and we see that it has increased Janki’s background insulin to 176% of it’s usual level. We’ve still got the pizza insulin to put in but as she’s been on the low side for much of the day, we leave it for now and watch and wait to see if it can be managed with adjustments to the background insulin.

10:03pm We decide it’s time to give the remaining insulin for the pizza Janki ate four hours ago. We probably should have delivered it a bit sooner. Janki’s overnight pump is putting in 192% of the usual amount of insulin she has at this time of the day but her glucose sensor is up to 10.3 now.

It’s not a steep rise so Janki’s cannula is probably fine. We do need to try and bring her level back down though because of the cumulative long term damage high blood sugars will do to her body, not to mention making her feel rubbish tomorrow.

The higher Janki’s blood glucose rises from this point, the more difficult it will be to bring down as insulin resistance and ketones come into the picture.

11:15pm We get another sensor alert to tell us that Janki’s high (up to 11.8 now).

It’s been over an hour since we delivered the pizza insulin and there’s no sign of Janki’s blood sugars coming down yet. Experience tells us that the overnight pump has it’s work cut out tonight so we put in a small amount of additional insulin to try and get on top of this so we can think about going to bed.

We have to be careful here to avoid “insulin stacking“ where lots of different doses of insulin end up acting at the same time and bring blood sugars crashing down. We use our experience and judgement to decide how much to give and will be awake for at least an hour to make sure all is ok. We also have Janki’s glucose sensor which allows us to see if her levels start to change too quickly, enabling us to take early action if required.

11:59pm 41 alerts/interventions later, we have come to the end of my posts detailing 24 hours of life with T1D.

Janki’s glucose levels have stopped rising although it’s still stubbornly stuck up at 11.4. We’ll be up for a while yet to try and bring it down with more insulin.

You might be surprised to hear that Janki’s numbers were in range most of the time in the last 24 hours (86%): she was high for 9% of the day and low for just 5%. These statistics of Janki’s control belie just how much work it takes to achieve this.

I hope my posts today have given you some insight into our “normal” and helped to raise awareness of Type 1 Diabetes and the challenges of living with a long term chronic condition in general: Janki has to get up in the morning and go through all of this again, every day for the rest of her life. Until we find a cure.

Thanks for all your support

For those interested, our resources during this regular school day:

- 1x Medtronic 640g with Enlite Sensors and linked blood glucose meter

- 1x Medtronic 523 on OpenAPS, linked to the Enlites for overnight

- 1x Amazing teaching assistant at school

- 1x Amazing working Mum

- 1x Working Dad (who forgot to put the delayed pizza insulin back in in-time...)

- 1x Amazing 7 year old living with T1D

- Ribena (full sugar at 10g CHO per 100ml)

(My apologies - I don't have the original sources for the images which were originally posted with each update through the day on WDD. If I've stepped on anyone's toes regarding permissions, please let me know)