Saturday, 24 January 2009


A child who falls in love with a "bockle of beads" in a shop will not be mollified at home with a plastic tub filled with macaroni.

A child who is four foot long will be too long to lie on a beanbag that is three foot long. Even if you have spent half an hour ramming the beanbag into the cover, even if it is a brand new beanbag, and even if it looks really comfortable.

I had the following conversation earlier.
"It raining, Mumma?"
"It raining, Mumma?"
"No, it's not raining"
"It raining, Mumma?"
"No, it's not raining, listen to me, it is not raining. Now find something else to talk about"
"It not raining Mumma?"

Combine this with the ever popular two-question call- "Wot doing, Mumma?" followed by the inevitable "Why?", and obtain one rather stressed Mumma. She's also taken to calling me by my first name, which is surprisingly annoying.

Roll on Monday. Monday we are booked into Helen House. Four whole nights of sleep, with someone else working the nightshift, someone else doing the boring bits of caring whilst I get to enjoy the positive bits. Someone bringing me endless cups of tea as I sit and cuddle Mog, if I like (and someone else distracting Little Fish to enable this to happen). Someone else answering the endless round of questions and finding neverending supplies of dolls, paints, glue, mud.

And someone else drawing up the medications and sorting out the feeds. I think that's my least favourite caring/nursing task (except possibly emptying the canister from the suction pump). Yes, incontinence isn't always fun to deal with, but it's generally close contact with a child, and I like that. Dressing changes and clothing changes get tedious, but it's still contact with the child. Dealing with seizures and breathing stuff gets scary at times (and worryingly tedious at others; should you really be that relaxed about something which could at some point kill the child?), but the treatment involves close contact with the child. Again.

Drawing up meds though, and washing up syringes, is purely mechanical. It's something which could be done by anyone. It's tedious, time consuming, important, and takes total concentration. Mog now has two tablets which are almost identical, and another one which closely resembles Comeback's kidney pills. Little Fish now has a couple of little brown bottles very similar to some of Mog's little brown bottles. And they both take different doses of one of the same medicines. It's not something I can do in my sleep. I can change a soggy bed without opening my eyes properly. I can roll a small child over without waking up. But it takes concentration to work out which bottle of cherry red liquid you are supposed to be giving, which sickly sweet clear syrup is the baclofen, which the lactulose and which the oxybutinin. It takes careful hand-eye coordinationto shake the powdered contents of a tiny sachet into a syringe to be mixed with water.

It doesn't take long. But it is monotonous - and yet that monotony is dangerous. Start giving drugs on autopilot and you run the risk of giving them to the wrong child. Or making other mistakes. So, for me, the luxury of Helen House is having someone else draw them up and bring them to us on a little tray. With a slice of cake for me. I don't mind squirting the drugs up a gastrostomy tube - again, that's connected to the child, it's closeness and it's care. It's the mechanics of getting the drugs out of the bottles. Cleaning the bottles. Assessing the remaining quantities in the bottles and chasing up repeat prescriptions. Admin.

Ironically, this same situation is one of the most stressful ones about being in hospital. I push hard to be allowed to draw up our own drugs when we are there, and manage to get this happening about half the time. The rest of the time the hapless nurse on duty has to face serious amounts of crossquestioning. Which turns into seriously cross questioning when the mistakes are discovered.

I keep trying to write something here that's coherent and vaguely interesting. And I keep writing pages of whitter which bores even me as I write it. I think this is a sign that I should, perhaps, go to bed.

Night all


Tina said...

But actually its not boring at all. I hope you get a good rest and refresh next week.

Anonymous said...

Enjoy your time at Hannah House--I know the break is needed and is probably long overdue.

Laura said...

Have a lovely time relaxing and enjoying the cuddles without all the other fuss. And sleep - ah bliss!!

PMDPeter said...

Us get bored Tia, NEVER.
Always enlightening whatever you write even when you are all having a 'bad'day.

We have all the two child meds to get used to soon. One who is on measures such as 0.75ml and making it 0.8 by mistake is close to an overdose. and the other on straight 5 or 10ml doses (easy peasy) Going to need to draw up a hospital type drug chart so we dont get it wrong.
Enjoy you time at Helen House. Keep meaning to make a visit there to see where big A's older brother spent his last hours, several years ago.


Robyn said...

not boring...have a fab time at Helen House...and the novelty hasnt gone for me yet on drawing up meds so let me be your admin person whenever you see me! :)

Tia said...

Welcome to come and visit us Peter. I did find A's brother's photo there on one of our visits.

We will all have a good time - counting the hours now.


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