Wednesday, 7 January 2009

You might have a medically complex child if

You phone the doctor's surgery to order some repeat prescriptions, and the receptionist not only recognises your voice and pulls up your child's details on the computer before you even ask, she also reminds you about the drug you usually have to phone back for five minutes after you place the initial order.

The same receptionist decides to bypass the system and send your request to the doctor she knows will approve it rather than the duty one who will be confused and baffled by certain parts of it.

Yet again with one hospital outpatient appointment you can tick off several different specialists who catch you as you sit in the waiting room.

You come away from the appointment in the knowledge that your child has been referred to yet another specialist, in a whole new specialism. And you are reasonably pleased about it.

When you get home, you find messages on the phone from another two specialist nurses.

On phoning yet another specialist nurse, and discovering she is off sick, you realise you have the choice of tracking down a different nurse again, borrowing from another parent, or making do for a week. And decide you can work out how to reuse yet more of your disposable items.

You are able to hold a conversation about the consistency and odour of Bisacodyl induced poo as opposed to Movicol stimulated poo. Not only this, but you are for a few seconds deluded into believing this topic is as fascinating to the world at large as it is to your friends with similar life experiences.

You can give a child a drug, knowing that the drug will almost certainly cause significant problems which will land the child in hospital, and yet decide together with the relevant medical professionals that this is the correct course of action.

You can hook a child up to a pulse ox, and make an accurate prediction before the machine has taken a reading.

You can hear a silent seizure from the next room, even when asleep with a pillow over your head.

You can sit beside your child and readjust her head half an inch at a time until you find a position which looks ridiculously uncomfortable, but in which she is no longer obstructing with every breath. And then you can go to sleep hoping she doesn't move her head when yours is under the pillow.

Your bathroom windowsill has not only showergel, toothpaste, toothbrush and shampoo, but also alcohol gel, dressings, surgical tape, sterile saline and latex-free gloves.

Your drugs cupboard is bigger than your drinks cabinet, and the delivery driver from the chemist is so used to your house she now doesn't bother knocking and just walks right in to leave the bags on the hall table.

There are twelve boxes of disposable plastics in your garage, and all of them will be used this month.

You have at least three items of medical equipment plugged in and charging overnight, but you consistently forget to charge the telephone.

You can bribe your small child to do anything with the promise of a teaspoonful of lactulose.

You can fix a broken wheelchair or at least bodge it together until the repairmen come, fashion a joystick controller out of blue tac, parcel tape and a pen lid, keep a running total of various drug totals in your head to avoid overdosing a child in a 24 hour period, simulatenously operate a suction machine, make a phone call, turn off a feed pump and separate a small child from a pair of scissors, but discovering one odd sock which missed the wash can make you cry.

Got any more?


Alesha said...

No more to add, but those were brilliant!

Sara x said...

How i love reading about your life and how i miss my similar life. Thank you for the smiles,
Sara x

Anonymous said...

One that probably shouldn't be admitted to--is suctioning a child's trach while driving a car at the same time.

Knowing why a vent is alarming before even entering the room and seeing what is wrong.

Able to hear an alarm that is in another room even with lots of noise going on in the room around you.

Anonymous said...

You go on holiday, realise you didn't pack the next packet of drugs and know which child used to have that dosage of drug, ring the parents and receive their left overs through the post!

Otherwise I think you pretty much covered it. Oh apart from dealing with secretions whilst driving but we should perhaps just brush over that one!

Elinor said...

I think you covered everything!

Anonymous said...

How about planning packing for a week in preparation for an overnight stay only to remember 5 minutes before you leave that you need to take something to change into when the inevitable 'go faster stripes' appear over your left shoulder!


Anonymous said...

Another one - if you are still accepting them! ... when you pull up outside the chemist and they recognise your car and so have your prescription ready and waiting by the time you set food inside the shop!

Or is that because we live in the sticks?!



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