Friday, 17 December 2010

To sleep: perchance to dream

I'm getting rather used to this nighttime netherworld I've been living in for the past week. In fact tonight I went right round to 3am before I needed to get up - we've organised ourselves into a shift rota and I only get called upon if R goes really low or else it's my turn to check - tonight he hasn't gone *that* low so the 3am check it was! Of course he was a little low then - 3.9mmols, only just a hypo but at 3am you're not going to leave it untreated until 6am when everyone begins to get up. So made him wake and drink some Lucozade then set my timer and waited the prescribed 15 minutes. Retested and he was 4.2mmols - a rise, yes, but not enough for me to think I can go back to bed now. More Lucozade and a Rice Krispies Square just to be on the safe side - normally this would be really over-treating a hypo but right now not much makes a dent in R's hypos. I'm waiting now for the timer to go off again.
I didn't need the alarm at 3am - I woke with five minutes to spare and I'm alert enough now to write this, in fact so far all night I've only hovered around the most shallow of dozes rather than dipping down into the soft folds of deep sleep. I feel very alert now but come 6am I'll feel as if I need to sleep for a hundred years. So far this week the longest I've slept in one go has been about 3 hours, any more would be a decadent and possibly dangerous luxury. I remember reading somewhere that you can survive for a couple of months without food, anything between 2 and 10 days without water and apparently about 10 days without sleep will kill you but after only three or four sleepless nights you'll begin to hallucinate, suffer mood swings and generally be unpleasant to be around.

Just did another test - he's dropped to 3.7mmols - so much for the Lucozade and Rice Krispies Square....He's had a mini can of Coke and I'll test again in 15 minutes. If that doesn't work I'll give him a whole bottle of Lucozade or maybe a honey sandwich made with white bread and no butter. All of this must be rotting his teeth...but it's keeping him alive.

So.....sleep. Who needs it?

Wednesday, 15 December 2010

Groundhog Day

Well after all the ups and downs of the last few weeks R had his stay in UCLH but by the time he was admitted to both our local hospital and UCLH his constant low blood sugar levels had come back up into a more normal range - typical!
After we finally came home from UCLH R's blood levels began to rise....and rise...and rise. It didn't seem to matter how much extra insulin we gave him, nothing shifted those levels from really high down to a more normal level. Until of course, just like before, he crashed and we've been battling low blood sugar levels (hypos) for the past three days and nights. The day time hypos are just about bearable - R can eat loads of high carb food like jelly beans, lucozade, cola, white bread - all of those are rapid acting - they get into the blood stream very quickly and are ideal for diabetics who are having a hypo. Things like chocolate - which used to be recommended for treating hypos are not the best thing to give because the fat content in the chocolate inhibits the absorption of the sugar and slows up the whole process which you really don't want if you're going lower.

So why was all of this happening to R?

Well he's probably still in the 'honeymoon' period with his diabetes - often after diagnosis when the pancreas has had a chance to recover from the overload a little bit it begins to work again for a short while but it tends to be short-lived and sometimes it can be more trouble than it's worth! That could be causing the hypos - R is injecting insulin and his own pancreas is producing some too - don't ever forget just how dangerous a drug insulin can be - that's why we've been up for the past three nights running trying to feed him with sugar to keep his blood levels out of the dangerous lows. How dangerous? Well... prolonged low blood sugar levels can cause seizures, brain damage and ultimately death. Yep, scary disease this one and there is no cure - insulin injections or an insulin infusion pump are just treatments.
What about those highs? The biggest culprit is growth hormone - he's almost 13 and on the verge of puberty, he hasn't started a growth spurt yet and boys, being boys, tend to grow until well into their late teens or even early twenties. So that means we could be battling highs for the next seven years.

Excuse me while I go and laugh hysterically. Lack of sleep, worry and sheer desperation living in this horrible twilight world of Type 1 adolescent diabetes turns parents grey and slightly unhinged.

The thing that angers me most of all - and I know I've said this before, so apologies - is that nothing we have done has caused this. Type 1 Diabetes is rather like the evil fairy who turns up at the christening and curses you all for no good reason. If I believed in karma I'd have to conclude that in a previous life I must have been one of Genghis Khan's henchmen.

And of course I had to cancel a class I was teaching this afternoon as I sit by the telephone waiting to hear from R's consultant about what to do next. I hate how this has come into our lives. The only upside is that we've met some wonderful people along the way....every cloud.