Technology is our best friend – until it isn’t…
We are SO reliant on technology to keep Eden alive, safe and healthy that when it isn’t functioning it just adds stress.
People have so many electronic gadgets in their regular day to day lives – but add in Type 1 Diabetes and we have a LOT more gadgets that do very important things!
here is the BASIC rundown of what we rely on daily
- Insulin Pump – yeah – quite obviously the top of the list – this baby literally keeps Eden ALIVE
- Blood Glucose Meter – wirelessly transmits her blood sugar value to her pump
- Dexcom CGM (continuous glucose monitor) – this is a 2 part piece of equipment.
- sensor – inserted into her arm (or other body part) that transmits blood sugar reading to receiver
- receiver – that displays the data in number and graph form
- Nightscout Rig – this is Eden’s setup for enabling D-dad and I to remotely view the Dexcom data
- consists of a phone and a Dexcom receiver – hooked together with a cable – that must be within 20-30 feet of Eden’s body (the sensor in her body) to be able to transmit data
- Pebble Smartwatch – Eden’s Nightscout Rig – transmits data to the “cloud” – which we pull down with our personal cell phones and then use bluetooth technology to pair with the Pebble so we can then see the data
As I mentioned – very basic rundown on the Nightscout process which was a complicated multi-step process to set up…
These gadgets take batteries and specific cables, need to be charged regularly and Dexcom needs to be calibrated with a blood sugar reading every 12 hours to help maintain accuracy.
We have gotten into somewhat of a routine where we have 2 Rig phones so that we can have one charging and one in use at all times and 2 Dexcom receivers so we can have one attached to the Rig and one for Eden to use and refer to throughout the day.
We try to calibrate in the morning before school and at night before bed – but you aren’t supposed to calibrate unless your blood sugar is stable (not rising or falling) – which is not always easy
We have a backup of batteries and cables up the wazoo – some gadgets warn when the battery is getting low – some things just stop working (blood glucose meter)
For the Nightscout Rig to transmit we also have to rely on phone/wifi/internet connection..
The past 3 days this carefully orchestrated technology “dance” has failed us – a number of things have gone wrong and it takes time to figure it out – time when Eden is at school that is hard for her to give….
Tuesday – she was high after PE but her blood sugar check and Dex were not accurate and in sync. Eden’s blood sugar was reading high pretty much ALL day – I lost data connection and stopped receiving data just after lunch and she was 320.. next thing I know she is texting me right before track practice – an hour later and she was only 62.. not good.. and I couldn’t see what was happening..
what does that mean?
D-mom drives to the school, sits in the car and observes track practice from a distance – her coach is nervous about the whole D thing and takes it very seriously (YAY coach!) but he thinks I am monitoring remotely and will alert him before anything becomes an issue. I can’t tell if there is going to be an issue – don’t want to freak him out by sending him a text message so I sit there – just in case.
Wednesday – Rig stopped transmitting data 1 hour into school day and we did NOT have data for well over 6 hours. Do I need to see Eden’s blood sugar every minute of every day? NO – but it is VERY helpful and in the instance of the afternoon before would have given a warning that she was dropping too quickly. This day she was high, high, high… She had a track meet straight after school and I was very concerned as to whether or not she should even run – whether I needed to replace her pump site – whether she had ketones or if I needed to come give her a shot…
Thursday – today…
in the middle of PE class I receive a text that the Dex sensor came out of her arm… DANG IT… so we will have no data AT ALL – AGAIN – all day today..
they say things happen in 3’s, right?
so grateful for technology and the devices we have – but not too happy with it right now!