When things go wrong and they often do! (Blog 5)

Type 1 diabetics are in life threatening situations everyday but when they are ill even a basic cold or stomach bug is disastrous!

Beren has asthma and gets chest infections every couple of months and he is also often randomly sick which is instantly dangerous for his blood sugar.

Last week he was both. Usually when a diabetic has a hypo (low blood sugar) they have fast acting sugar to bring it back up to a safe level. But this time he wasn't coming back up. I repeated the hypo treatment 3 times and was about to ring an ambulance and use my emergency glucose injection (a huge needle normally used if someone is conscious from sever hypo) before he came back up again. He ate enough sweets to make him sick before he came back up to a safe level only to drop again an hour later. This happened a couple of times a day for 4 days. We went to the doctors then had a day in hospital but they didn't find anything wrong causing the extreme lows and trusted me to look after him at home and to phone an ambulance if needed. We went to the doctors again a few days later. Beren had a chest infection yet again which may explain the dangerous blood sugar as his body was trying to fight the infection.

As this was happening I couldn't have coped without the self funded continuous blood glucose monitor (CGM) Dexcom G4. I had only been using it for a short while as it's so expensive but I couldn't do without it now.

The CGM is a sensor that measures glucose levels just underneath the skin and a transmitter that is fastened on top of the sensor and sends blood glucose data wirelessly to the system receiver. A new sensor is inserted under skin in a different position every week

Although the CGM is life saving, as with all technology they are not 100% accurate or reliable all the time and can go wrong. If Beren's blood sugar is dropping fast it can't keep up so he would already be hypo before the CGM alarm would tell me. Also most worryingly is it sometimes gets confused and goes off for a few hours without warning. So as you can imagine when that happens in the night you may not notice and there would be no alarm for a low or high blood sugar during that time. The CGM also can just fail for numerous reasons. I'm normally stocked up so have spares but as I said they are so expensive and I hadn't expected this to happen. The sensor has also been knocked off on a few occasions.

Just as Beren was starting to recover but his blood sugar was still worryingly low, I had the most disastrous CGM experience so far.

The CGM came up with an error code only a few days after it had been inserted. So I had to insert a new sensor which happened to be my last one. I would have been ordering a new box of 4 in a few days. So I thought I'll insert this last sensor and the order a new box early. But I inserted the new sensor after Beren had got out of the bath (my mistake) and 5 minutes later it fell off and I had no more! Dexcom are always really good and sent me out an emergency sensor which arrived the next day (after a day and night of hell involving even more finger prick testing than usual, a lot of guessing which way his blood sugar is heading and extra worrying). I was so excited to insert the new sensor but when I opened the box the needle insertor had sprung out in the post and was unusable! So another phone call for emergency sensor delivery and another day and night of hell!

Anyway, I always joke that the sensor insertor is like a torture instrument but you don't normally see the needle insertor as it's concealed and only comes out under the skin. You get to see on the picture here the length and width of the insertor as it was damaged in the post and had sprung out. It inserts the sensor wire under the skin that's why it is much wider than normal injection.

I was shown in the hospital how to insert the CGM. Even the doctor was surprised at how brave Beren was. But when it came to me doing it next time at home it was an awful traumatic experience. I didn't feel confidant and I made mistakes, hurting Beren and wasting an expensive sensor and having to insert another one straight away with Beren being held still. Also Beren didn't like it being seen. He always gets asked by other children what it is. He said to me upset in bed one night 'I always get asked about my CGM because nobody understands, I tell them it's for my diabetes and they still don't understand'. I'm pleased to say I'm now a pro at insertion, Beren is happy to let me do it and also happy to explain to people what it's for!

I haven't had much sleep since using the CGM but this is ok as the alarms are keeping him alive and reducing his time out of blood sugar range so less long term damage is done. Also it is better than jumping awake in a sudden panic as I was doing nightly before Beren was wearing his CGM!