Tuesday, 22 April 2008

Running A-wee

Definitely back to earth with a bump now.

I phoned our Health Visitor yesterday, looking for advice on more absorbent nappies for Little Fish. She phoned me back a while later after our chat, having pulled out Little Fish's notes and checked back, and because she was concerned that some of the descriptions I had described could be significant given LF's diagnoses. She recommended that I contact the urology department urgently "just in case", but of course is not a urology nurse, so didn't give details of what the "in case" could be.

So, I rang the urology clinic. We have an appointment in the middle of August, at a time when we will be on holiday. The nurse can't change that, I need to phone someone else to rearrange it, and no, it probably won't be able to be brought forwards. But the Health Visitor said it was urgent. The urology nursing clinics have just been cut down from 5 days a week to 3, and from 2 nurses to 1. She can therefore fit us in "urgently" on May 27th. Five weeks for something which may be urgent; I wonder when it becomes an emergency?

Meanwhile, Little Fish continues to soak through all her nappies on a regular basis, getting through 2-3 changes of clothing each day. Something she should not be able to do, given the amount of fluid she takes in, and the size and functioning of her bladder. I could google symptoms but they scared me silly I'd rather wait to see the expert rather than trying to work out the likelies from the mightbes. She's also managing to produce on the potty, something she shouldn't be able to do, according to the experts. I thought this was a good thing but it turns out it might actually not be - not sure why though.

I am also curious to know why 1 litre of water is "not very much" for a Weeble shaped 3 year old but is "plenty" for my 5 year old, and why yet again the advice from the experts is so different depending on which expert is talking at the time.

I'm also shocked at the 5 week delay even to see the nurse - I suppose I have been spoilt by our other liaison nurses (gastroenterology, respiratory, epilepsy, community and others I've probably forgotten) who will nearly always fit us in that same day; the longest we've needed to wait has been until the end of the week.

And whilst typing this up, Little Fish fell asleep on the potty, ending up lying on the floor in a puddle of wee without waking up. I had to wake her to hose it out of her hair, she was not best pleased (and nor was I). Anyone joining me in running awee?


1 comment:

Doorless said...

Oh my, My friend here in Holmen has a boy with SB. He has to be cathed to wee. He will be getting a supra pubic in June to cut down on the many UTI's.
I do hope your worst fears will not be realized.
When I was training Amber she did the same thing. It only became an issue when her kidneys were damaged after the back surgery and the infection from that. Then we had to cath her if she did not void in 4 hours. She was never trained after the massive infection that led to the kidney damage.
Not fun when you have to hose down the hair like that.


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