To Eat Or Not To Eat !

Oh let's talk about food again - Hari does SO love food!

(She had cheesecake again today - but don't tell the doctors -or Anne Berry - I'll get reported to Social Services again - for letting her eat real food!)

The trouble those nurses used to give me about Hari and food when she was younger!

(Remember that sentence - it will become very relevant when I eventually get to the story I'm saving for later!)

What is that old saying - can't do right for doing wrong?

When Hari was younger it was almost impossible to get anything thicker than milk down her NG tube - it just wouldn't go down - even using the plunger on the syringe made no difference. Nutritional feeds that were slightly thicker than milk would go down - with a lot of effort - so much effort that it hurt my arms to push the plunger down.

In an attempt to get some real food into Hari when she wasn't eating much (usually when she had a cold or virus of some kind) I tried blending foods with milk in the liquidiser and then sieving them to make sure there were no lumps but these concoctions simply would not go down the tube.

On one occasion the sister on the ward asked me if I had tried this - when I explained that we had tried all sorts of concoctions but that none of them would go down the tube I was in for a roasting!

She flew at me and announced emphatically that they 'had other parents' who put all sorts of foods down the tube and that if they could get these things down the tube then I should be able to.

Obviously I must have been lying then - NOT!

Years later (and coinciding with the story that I am saving for later!) it finally became possible to get thicker fluids to go down Hari's NG tube. Admittedly some things are harder than others and some things can still hurt my arms when pushing the plunger down - but at least they do go down now.

So there has been some fun and games inventing some weird and wonderful concoctions that are both nutritious and vaguely sane. The result of this is that Hari can get real food when she is unwell and not eating.

So finally we have cracked it - we can get real food down Hari's NG tube just like all the other quoted families - gold stars might seem appropriate!

Or not!

Because now that we have got this to work somebody has decreed that this practice is unsuitable! Somebody has decreed that I should not feed Hari in this way. Apparently it is dangerous.

Judith Armstrong (remember her - the modern matron?) told me that it was dangerous in case any of this type of feed got into Hari's lungs and that only the nutritional feeds should be used.

Now that was a very strange an ill-informed statement - you see there is no more risk to the lungs from aspiration (or a misplaced tube) of real food than of nutritional feeds - both would be equally dangerous and are still risky in terms of aspiration when using a PEG feed. Then consider the fact that any oral medicines that Hari has also go down the NG tube - and some of them are far more risky in terms of lung damage than any feed.

When I pointed out to Judith Armstrong that nutritional feeds were just as risky if they entered the lungs she had no useful response - in fact she muttered agreement.

So why was this issue later raised with Social Services/Adult Protection - with the trust claiming that I should not use real food?

I did hear that one of their infamous secret meetings decided that this referred only to 'best practice' and that we didn't actually have to use 'best practice'.

Two points arise :

1) The term 'Best Practice' is no more than a politically correct linguistic anomaly. It means nothing and is misused in order to impose a practice that may in fact be inferior to the practice being outlawed or over ruled. It is a top down imposition that takes no account of individual need and, in health care, risks the oppression and neglect of individuals when their needs differ from policy.

2) We don't need their approval - or permission!


So real food is far preferable where Hari is concerned.

Today's cheesecake was a blackcurrant variety - and Hari enjoyed every mouthful.

Later on we hit the shops and Hari stocked up on raspberries - I bought Y Fenni cheese - oh I love that stuff - wonderful with anything - but tonight I ate it in a sandwich with crunchy peanut butter - tomorrow I may put it in the middle of some home made lamb burgers!

Who needs nutritional feeds!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!