Theres so many things about being Reubens pancreas that Im still learning.
Afterall Ive never been a eh-herm.. pancreas before.
Infact before his diagnosis I never really considered blood sugars or carbohydrates (except when dieting myself). Wait - I lie - one of my favourite excuses for a grumpy husband was his "low blood sugar". I would always suggest he go and eat something!
I definately never imagined being a pancreas for my son.
Something that I came to realise a few months into this journey is that I was so freaking afraid of running Reuben 'in range'. For a normal healthy adult I beleive this to be between 3.5 and 7.7(?) Dont quote me on this. The range for a child under 6 with diabetes is to target between 5-12mmol/l.
Because Reubs was a baby his blood sugars would swing around wildly sometimes dropping low in a matter of an hour or two. Volatility was a daily occurence. It has been stressful and requires constant monitoring. I realised one day that I was inadvertantly keeping him on the higher end of his range because of one thing.
Please remember this wasnt intentional - parents of diabetic kids are WELL aware of the long term complications that can develop from out of control high blood sugars.
His first real hypo episode happened late one night a few months into my stint as a pancreas.
As was my habit I would stay awake until at least 1am or 2am to do a final test before retiring for the night. I layed down to breastfeed Reubs at the same time I pulled out his optium exceed and pricked his tiny finger and managed to collect a sample of blood. My eyes were half closing and my brain registered a 2.3 but honestly I was already asleep.
A few minutes later Reuben began seizing. I woke with a start and screamed at my husband to get a hypo fix. He is extrememly vocal during a hypo and this is just as frightening as the other symptoms. A hypo-ing baby Reuben was flailing, his eyes unable to focus, limbs shaking. I had to use force to hold him in my arms safe - head steady and with hubbys help hold his mouth to get the honey in there via syringe. The child needs sugar and the last thing he wants to do? Take sugar.
I was terrified and felt immense guilt that I didnt check up whether hubby gave him supper, that I fell asleep from exhaustion etc etc etc....
I felt like a bad mother. An awful substitute for a pancreas. I was terrified I had done my son harm.
Of course the first thing a parent wants to do is feed up their child with enough sugar to stop this happening again.
Then the blood sugar swings high because the hypo is treated by an inexperienced-panicking-parent with too much sugar.
The reality is diabetes is much better treated with a bit by bit approach. Re test 15 mins later. Re treat. Re test. Im learning in a series of what oprah calls 'ah-hah' moments somethings that other parents might cotton onto a bit more quickly!
When Reuben had a hypo with mild symptoms yesterday (during his afternoon nap) I gave him a teaspoon of honey to bring him up. I held him in cradle the 'breastfeeding position' and he sucked it off my arm! He happily takes honey this way its comforting and he feels safe and takes the trauma out of jamming honey into his mouth. Then I followed up with 125mls of milk with a teaspoon of glucodin powder.
Because the milk is low GI, the honey raises him back into range and the milk holds him steady for another hour or two without the crazy yo-yo pattern.
So now we no longer over-treat hypos. Experiencing a few scary ones has almost taken the fear from the situation. Its a business transaction. Keeping Reubs down in the optimal range means sometimes we are going to get hypos. It isnt the end of the world if we catch and treat it for him (to fall below 5.) Infact studies have been done (according to a visiting endo at our hossy) that show no real harm is done during mild hypos in comparison to the effects on the brain long term from 'high' sugars.
Ive been a shoddy pancreas - but Im getting better every day.