Thursday, 28 February 2013
As you can see the tube weaning is still going well - he's down from a previous night feed of 800ml to a mere 500ml and is beginning to eat me out of house and home. It's such a joy to hear him ask for food, it still makes my heart flutter. I'm working slowly to make sure he is very comfortable but if I'm being really honest, I probably need the comfort blanket of that tube more than him. It's taking about two weeks to reduce each 100ml; there's a lot to consider apart from the mere calorie intake. We have to maintain his fluid balance which is essential for his kidney, but also we don't want to mess with the absorption of his anti-rejection meds. It's all a bit of a numbers game really.
My next task is to practice getting the medication into him orally - I'll start by squirting the same volume of water into his mouth and then try to persuade him to drink 60 ml water chaser to flush it down. That should be fun! I see a whole new level of bribery on the horizon, this could get expensive!
My current major problem is trying not to lose the run of myself - I can't seem to stay in the moment - I keep worrying about three steps ahead of each stage we meet. It seems so counter intuitive for someone who had to stop planning for so long. Now I'm fretting about calorie intake on 400ml of liquid feed, I wake up a 4am to have a right good worry about how much double cream I'm sliding into his food, is that the reason for his constant runny nose? If I reduce the dairy intake - how will I beef up calories without adding volume? What happens at our next clinic visit in four weeks' time when he's due for a tube change? Do we change it or just bite the bullet? I've even started worrying about next year which is a complete waste of time and an alien concept to me.
Of course then, in a blinding flash of the bleeding obvious, it dawns on me: I have been so privileged being forced to live each day as it came with Boy Wonder that the concept of his future is something I have yet to learn to handle. It's all so tantalizingly close this life after tube, I'm worried I may not be up to the job. Boy Wonder, on the other hand will take to it like a duck to water.
There is a lesson in there - if I could cop on and learn it!