Tuesday, April 21, 2009


Well, the audiology clinic was certainly the easy bit and his hearing came up normal again, so that's great. We'd already been to the ward to get his injection sites numbed in plenty of time for what was to follow. They have to squirt the dye for the kidney function test into a vein in his hand, not his port, although they accessed that too - so two needles. He was resisting both like mad. We talked about it afterwards a bit, although he couldnt stop crying really. This is not an issue of pain, its all in his head but how to overcome it is the question... Later on, for the tube fitting he was even more distressed. He starts to challenge us with, "Why wont you believe me when I say I dont want it?" I was off the ward by that time and thinking that a break from the tube would be a good thing, at least until after he's had a chance to speak to the play therapist. By the time Ally got my text suggesting that, they'd got past fever pitch and he'd spoken to one of the play specialists on the ward who recommended drinking plenty. It seemed to lodge as a plan worth trying so they went ahead but I fear it's just reinforcing with bad experience after bad experience. We're in a bit of a strange situation where the nurses dont seem to want him to have sedation but the Drs dont seem so bothered. The nurses keep referring to the 5 and 6 year olds who can put their own tubes down. But that sounds more like the production line model of healthcare than the personalised holistic models you can read about in the text books. As parents it's hard to sponsor that level of distress, in spite of it being for the long term good.
So it was a pleasant surprise to come home and find that he'd decided to go along with Ash to golf tonight. Now he's munching honey cheerios for dinner - fine by me.


Susanna said...

Unfortunately it is all to esay for us 'health care staff' to expect people to react the same to situations. Pads may well cope much better with other aspects of his treatment than other children do- I am guessing he moans a lot less overall. Daniel only had one bad experience in hospital- they could not get a line in and he was like a pin cushion- and it took us a while to get over that- and pads has to go through it so frequently he probably doesn't have the time to 'get over it'. Will be praying specifically about this.

Mike Johnson said...

Thanks for that Susanna. I agree. Al spoke to a parent of one of these famous young-ins who self-administer their tubes and it sounds like they are now showing signs of psychological damage. P didnt sleep well last night - afraid he'd get nightmares... He's decidedly brooding today, comments that "it's a bit like saying to an arachnaphobic that they're getting a spider for their birthday". His nasal passage has sustained some damage (is sore and dripping a lot) - probably caused by the speed with which the tube was inserted. The nurses probably think they're getting the job done but what about the long term damage? In any other setting, what we took part in yesterday would be been classified as abusive. Under the admittedly contested area of Gillick competence there is a consent issue here.