Tuesday, 9 September 2008

Purple Prose

Today has not been the best of days. It hasn't been the best of weeks, so far.

We have moved from these

to these.

A sand incident. Don't ask; she's three - it happens! However, in happening, it just cost the NHS £180 (around $300). And I'm the one who got the lecture for it. No more sand for the next three weeks I think.

It isn't all bad. Because we needed to get the casts changed, we spoke to staff at the local orthopaedic hospital. Because we had to speak to the staff, we learned that they were wanting us to come in urgently about a skin infection Little Fish has on her foot. They wanted us to come in urgently, but no one had actually told us this - I wonder how long they'd have left their urgent request before contacting us about it? And because it happened, we got to take a look at her feet and check for pressure sores, and we found there are no marks at all. Great.

Meanwhile, results from swabs taken last week came back. Both girls are growing MRSA in their stomas. Little Fish is also growing a different kind of staph in hers. As well as the third kind of staph in her foot. She likes to be awkward keep life interesting.

So, tomorrow, both girls start a course of a different antibiotic. Poor Mog, she took the last dose of her co-amoxiclav this evening. And tomorrow she'll have to start again with a different one. Pity the poor washing machine too (and its refueller).

MRSA. Lots of us are living with it, without any problems. It's only when it starts causing problems like Little Fish's sore stoma that we start finding out about it. And now suddenly we are modern day lepers. One person does not wish to work with the girls until it's all cleared up. Our carer this evening turned up with armfuls of gloves, alcohol gel, aprons, and paper towels. All except the paper towels we have here anyway. There's a part of me which feels affronted about the fact that our nice old worn soft fluffy towels have been deemed unclean, that our staff now have to use disposables, wiping their hands not only between handling the girls and after touching stomas, but as they exit our house. And a bigger part of me which says it's all just sensible precautions, and we don't want them to pass it on to other vulnerable children. But the small, houseproud* part of me is still affronted.

More matters medical. Remember how Little Fish has been having bladder problems since April? It turns out that the appointment we cancelled for August did not get cancelled, and that we are now in trouble for having missed it. We missed the one before it, as the radiology department told us we need not attend. And the urodynamics test we've been waiting for since June, the one which is supposed to happen in a fortnight? There's no record of that on the system either. Back in April, I was told Little Fish would need to be regularly catheterised, starting very shortly. It is now September and no progress. I hope and pray we are not doing long term damage to her bladder here.

And I have a small child begging not just for biscuits and chips but also for bread and cheese. It is somehow much harder to resist a politely worded request for wholemeal bread and extra strong cheddar than it is to refuse the demand for a chocolate biscuit. I hope we can get some decent feeding therapy in place soon.

Little Fish has just started saying "I want to jump" "I want to walk" "I want to stand up tall". I can explain how her legs don't work, I can talk to her about her cool wheels and how good she is at nipping around in all her many chairs. It doesn't compensate, but it is something positive to mention. This whole wanting to walk and jump is not, incidentally, helped by the vast numbers of people who see that she has had surgery to her feet and assume that it is to help her walk. As a result, she now thinks this is the case herself. Thanks, world.

But, of the two, I can handle the "I want to jump" cries better than I can handle the "I want to eat" ones. Cuddles, bounces (gentle ones due to her brain malformations), rocking chairs, super deluxe wheelchairs and wheeled standers all help to compensate for that. And in general, people make "cool wheels" comments rather than "awwww such a shame" ones. "I would like a bit of bread and cheese, please" is not compensated for by "here you are darling, have some green sludge". Pink sludge doesn't help either, frankly. And comments from the rest of the world are less "cool food", more "ewwwwwww yuck" or "baby food".

Let's end on a positive. Mog is asleep, no chloral hydrate needed tonight. We're reducing one of her seizure meds and although it's only been one day, she seems to be having fewer seizures as a result. Tomorrow we'll be adding in a new anticonvulsant and who knows? This might be the one which actually takes them all away. It's unlikely, impossible, impractical. But every time we try a new drug there's a tiny flicker of hope that this might actually turn out to be The One. Of course there's also the possibility that it'll be The One to have totally unacceptable side effects and cause even more problems than she already has, but I said we'd end on a positive, so we'll ignore that.

Little Fish is asleep too, so I am going to copy them both.
Sweet dreams

*the houseproud part of me is very small indeed. Big enough to be affronted by things like this, not big enough to pick up the HAMA beads Little Fish scattered so generously across the sitting room floor before going to bed, not big enough to wash up the supper things yet, and definitely not big enough to finish painting and decorating.


Anonymous said...

Oh Tia,
Seems like so much at once--one of these things at a time would not be pleasant to deal with but to have to deal with so many issues at once makes for a rough time.
It would certainly be hard to resist LF asking for things to eat that she enjoys--Hope they can work out something soon--that she'll be able to enjoy and like.
Keep up the good work-- you are an inspiration to me.

Robyn said...

LF has alot going on right now doesnt she and of course you too! too much to mention individually but i hope you (or they!) get all the bits sorted asap for both your sakes.
much love

MOM2_4 said...

Oh Hun, I am praying that the new med will be The One!! Sure would be nice if the med Josh just started is The One as well. I so know the "will this one work?" feeling.

ARG on all the other stuff. Hang in there!!!

Elinor said...

Thinking of you all.

Alesha said...

"Ditto" what everybody else said, and UGH! on the mrsa.

It is a thing that strikes fear in folks, doesn't it? And we do want to be compassionate, but not at the cost of people making personal contact with our children.

I think that's the thing - don't fail to interact (hug, touch, dress, bathe, talk to , tease at, play with) my children because you are afraid of them. Figure out how to make it work. They should not suffer because of 4 letters!!!

We haven't experienced it yet, but it's almost inevitable isn't it?

Praying for the food thing...so hard to deny them anything. Isaac is starting to "ask" for bites now, too. If they tell us to stop, it would be very hard. You can't hide in the back room to eat, for goodness sake!!!

Anyway, praying...


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