July 27, 2010

How it was, getting my g-tube

Everyone, I have written a piece on my journey with getting my tube, which was nearly a year ago now, on my other blog.  You can read it HERE.  I put it there rather than here because as it's a very personal story it seemed a better fit somehow, and the sort of thing my regular non-tubey blog readers will appreciate too I think.  Please enjoy.

July 23, 2010

Someone needs your know-how. (Bonus Recipe below!)

Here's a funny thing.  It never occurred to me that someone who posts something like a recipe for BD in a public place - like the internet, on an open website - might have an issue with that recipe being reproduced.  I mean with the recipe instructions being reproduced, not the food resulting from it, if you get my meaning.  I might understand from a proprietal point of view, you know; "it's mine and should be attributed as such" but all of the (very few, admittedly) instances of this have come from people being very careful about being seen to give advice.  They're happy for people to view their recipes in a controlled context - their own website, book, online forum group, whatever - but don't want them reprinted, or reposted, anywhere else.  In case someone then uses the recipe, does themselves harm, and comes to blame the author of said recipe, who then presumably not have the seeming protection of the controlled and suitably-disclaimed environment the recipe was originally published within.  Or something along those lines.

So naturally I will not be reposting the recipes or recipe information of those who do not wish it so here.  I do, however, intend to link to their websites etc where appropriate and authorised (I do believe in asking as a general rule).  

But regardless, there you have it.  I get the reasoning, even if I don't subscribe to exactly the same view of life.  I mean, look at my disclaimer page on this site.  Still, it's sad to live making decisions based on fear so I am intending to subvert that and to do it, people, I need your help

Yes, your people need you, people.

Overwhelmingly what I'm hearing is that people want to see - and many want to share - sample recipes.  It happens all the time on various forums and that's wonderful.  When I started this site the idea was at its core to provide in one place some distillation of wisdom on the things that people new to tubefeeding seem always to be asking about.  And one of those extremely common things is "what should I put in my blend?"

Now look, before we go any further, I'm aware that there are those who have some dogmatic attachment to a notion that people - parents of tube-fed children in particular - should figure it out for themselves, in particular should devise their own recipe from scratch first, as some sort of necessary step towards self-empowerment.  Of course I respect the right to believe as one chooses.  I however think that "shoulds" and attempts to decide for someone else what's best for them, however subtly done, are just a wee bit redolent of power games and insecurities being played out, so I'm not buying in.  There is nothing wrong with trying a recipe you come across that seems a good fit for your situation and it does not make you a lesser carer or less committed to your own empowerment, OK?

As I mentioned just before, I link to different sites.  Groups like the Blenderized Diet Group are excellent sources too, but can be hard to navigate for things like recipes etc.  What I am proposing here is sort of an open-source BD recipe list, comprised of recipes you submit or agree to have reproduced, in a relatively navigable format. I don't know how I'll organise it exactly yet, but there will be a way.

What this won't be is a list of suggested ("should") recipes, or in any way partisan or judgemental.  If the contributor (you, for example) wishes not to be acknowledged by name (or wishes to use a particular name) then this is fine.  I'll be posting the recipes on this site and taking responsibility for any blowback myself.  I have a tip-top disclaimer, but anyway, I just don't have an issue with sharing honestly.  If you are wanting to make claims on behalf of a recipe (ie OMG, like, CURES ALL CANCER!) then I will most certainly be attributing that statement directly to you, the author.  These things can be well worded, as we all know.  In the litigious society we inhabit, where entities like pharmaceutical corporations wield very big legal and financial sticks around to protect their commercial territory, we have come to read between the lines of the weasel words this situation forces us into. You know, "may be of assistance in.....has been reported to improve...."  Adapt and survive, we do, just as in all of nature.

These days I do my best to avoid the whole judgement and cynicism issue with corporate greed / Big Pharma and anti-life practices (oops, there's me judging right there!), instead adopting a practice once taught to me by a precocious unconscious master to improve and enlighten relations with the traffic police.  Whenever I see those flashing lights in the rear view mirror I just say to myself  "I love the police; the police are my friends".  And do you know what?  They pretty much always are. You can try it next time you see a story about a drug company that makes your blood start to rise.  "I love drug companies, drug companies are my friends".  They do do some good work, you know.

What it will be is a list of good ideas for blends of all sorts.  I'm thinking (just off the top of my head for now) starter blends for infants, vegetarian/vegan blends, super-hi-cal blends, ketotic diet blends, gluten-free blends, super-antioxidant blends, the easiest blends in the world to make and clean up after, great blends for if you've only got a wimpyish domestic blender, tasty blends for kids weaning.......you get the idea.  Get amongst your thoughts and ways, folks; how you do it just might help someone else - and I think putting a whole bunch of such stuff in one FREE spot would be a Good Thing To Do.  But it won't work without you, now, will it?

The demand is strong for this, but is the will to be involved and help others equally as strong?  My guess it is probably even stronger than the current demand.  One thing I've learned about us tubey types is that we seem to be well-above-average in our willingness to share and help others (even if some of us do it in odd ways :-P) so apologies right up front if this snowballs on me and I have to dig for a bit to get it into shape.  Anyone who has good ideas on info and organisation is *so* welcome to throw their 5 cents worth in.  Or more, if you can spare it.

Sharing = Good Thing.

So please, comment away down below or email me here with your recipes, ideas, inspirations, permissions, and anything else even remotely on-topic (or not if it's a good read!).  Please use the 'share' functions below too to spread this out to anyone who might be able to contribute or might benefit from the ideas here if you feel that's appropriate.

With many people chipping in just their own little bit, we can make a wonderful one-stop free resource for getting ideas and guides about how others have done it.  Maybe you, like me, invented your own wheel with this?  I think this is a good thing for people to have available.  I sincerely hope you do to, and can help, even if it's just your daily blend guide.

That's all for now.  Except I promised you a recipe, so here's what went into my blender last time (as always, going by memory, with my patented weights and measures system).

500ml slow-cooked roast pumpkin soup:  I made this with roasted pumpkin, roasted onion, garden fresh paprikas, vegetable stock, basil, ginger, caraway seeds, black and red peppercorns, and tahini.  Apparently it tasted good.
Almonds, small handful
Walnuts, larger handful
Pepitas/Sunflower seeds/Pine nuts mix, rather largish handful
Goji Berries, maybe 30 or 40 I think.
Organic Sunflower Pumpernickel bread, about 100g I'd say. Yay leftovers!
A banana, frozen.
A fennel bulb, mediumish
Kale, maybe 12 leaves or so, raw.
Flaxseed meal, probably 1/4 cup, maybe less.
Very fresh lovely local EV Olive Oil, a big gurgle and then some.
Wakame seaweed, large pinch
Fennel seeds, ground ginger, ground cardamom, maybe 1/2 tsp each
Organic oat and honey milk, 1 litre.
Pomegranate juice, about 500mls.

That's about it I think, and ended up with just over three litres of not-quite-gravity-tubeable blend, so about 8 400ml feeds.  This way I can dilute at feeding time with hot water (adding about 50ml) in my 500ml containers, shake, and have a nice warm feed via gravity.  So much less messy, I find.

NEXT TIME I'm going to try and organise (remember) to measure and weigh it all and do a calorie count and breakdown for y'all (and for me, it's been a while) and I'll pop it up here.

OK then, recipes ahoy, folks!

July 19, 2010

Syringe Lore - how to make 'em last

Everyone who uses a tube needs to use syringes.  Some just use little ones for flusing and administering medications etc, and they are generally no problem at all.  Those who bolus feed though....well, that's a different matter.

The usual syringe used for bolus feeding is a 60ml catheter tip syringe, although some use a slip tip.  The main difference is that a slip tip has its tip off towards the side, rather than in the centre of the barrel, which can be handy on-the-go if you want to dissolve meds in the syringe itself.  Your average 60ml syringe holds more like 70 or 80 ml when filled right up, and is designed for a single use only.  This last point is important.  Being medical supplies in this throwaway age, they are made and packaged in a sterile state and are only meant to be used once.

As if that's going to happen.

Your average catheter tip types.

When I was a very small child I had recurring nightmares involving The Count from Sesame Street chasing me around my family doctor's surgery with a Very Large Needle.  Yet I've never been afraid of needles, weirdly.  Imagine the needle they'd use on a 60ml syringe!  And yes, he always caught me.

When I first had my tube placed, and the hospital dietitian came around to help with my first feeding, she pointed this out, and carefully explained that as this was a hospital, and they were presently responsible for my safety etc etc, they would be using a fresh syringe every time.  But as syringes can be costly, and I'll be feeding 5 times a day......"most people get a good week out of a syringe but I wouldn't recommend longer than that" she said.  She also said "you didn't hear that from me".

On my planet, syringes are not covered by insurance or subsidised by the state, and I use them a lot, so I'm understandably interested in useability and longevity.  Because of hygiene and CYA (Covering Your Ass) issues, you may not get good info about caring for syringes from your medical provider - which is odd, as most insurers in the USA only provide a fraction of the number you'd need for 'single use only'.

As we do here, we'll distill the wisdom of the group, and I've broken it down as much as possible into issues.

1) How long do they last?

Well, it depends on all sorts of things.  The type of syringe, the sort of feed or food, how they're washed and cared for, and so on.  If you're just doing gravity feeds (ie not using the plunger) then the answer is as long as they still wash up OK.  The weak point of the setup is the rubber tip on the plunger, we'll look at that next in...

2) The Case Of The Recalcitrant Plunger

No, not that sort.  But the principles are oddly similar.

So, yes, the main problem is that the plunger gets hard to push or pull.  This is nearly always because the texture of the plunger changes, and it also 'grows' slightly from the wet/dry/hot/cold cycle of washing.

Tip #1:  Don't wash it.  I wouldn't do this personally, but there are people who do and aren't dead from food poisoning so it's probably OK but what they do is just wipe the plunger with a paper towel.  this does in fact seem to make it last a whole lot longer.

Even without washing, the rubber (or synthetic rubbery stuff) that most syringe stoppers are made of will start to get sticky or large, but you still want to be able to eke out its life and not have to have arms like Popeye to do a feed, so...

Tip #2:  Lube it up.  The three main variations on this I've heard are cooking spray (like you use for baking pans etc), cooking oil/olive oil (Popeye wouldn't use Olive Oyl surely, oh, The Horror!) or the blend itself.  I use the blend because it's easier and my blends are always oily enought to do the job.  I've used olive oil, which was OK, but haven't tried cooking spray because frankly the whole concept of aerosolized synthetically amended cooking spray makes me feel all uncomfortable.  Just seems wrong, but that's my personal problem.  Everyone who uses it says it works great!  You simply do a quick spray/dip before the first plunge of the session, and away you go.  Should be good for 5 or 6 plunges before having to repeat.

Tip #3:  Wash cold, dry together.  I'll get to washing shortly, but it is true that if you just use cold water you avoid the whole heat-expansion issue, and many people swear by letting the plunger dry in the syringe barrel, not quite pushed in all the way.  Lots of those people give it a quick lube spray first.

Tip #4:  Use a silicon O-ring syringe.  Sometimes the BD and tubefeeding boards have really happy days where a thread makes everyone smile and say "wow!"  I remember a couple such days when this subject came up, and The Squirrel Store Syringes were discovered (click to see).  They are available elsewhere, yes, but this seems to be the best price in the US.  I'm waiting for them to get back to me about shipping overseas as I'd have to buy a box of 125 locally, which would be silly.  Why silly?  Because those people who use them are in some cases actually embarrassed to admit how old their everyday syringes are.  The silicon o-ring has none of the problems a rubber stopper does.  End of story.  I'll be getting some soon as my supply (I bought tons) of the old Monojects is running out.  Here's a picture, see the difference:

3) What else goes wrong?

a) Barrel discolouration, which isn't actually a problem unless you are freaked by a brownish tinge and can't stop yourself thinking of it as 'dirty'.  It isn't dirty, because you wash it properly, right?  It's just yummy (usually oily) food stuff migrating into the plastic and staining it.  I have seen no evidence to suggest that the reverse happens (plastic migrating into food) and along with many others have happily lived with a very brownish syringe with nothing bad happening.
b)  Disappearing numbers.  On the printed-on types of syringes (as opposed to the moulded/scored types) the numbers eventually wash off.  If you actually use the numbers, and have the printed type, many people have found a simple strip of sellotape over the numbers protects them, and weirdly enough seems dishwasher-safe too.  Problem solved.

4) Washing - the best way?

Look, I don't know that there's a right answer to this question.  I've certainly changed my procedure from the fairly paranoid days when I first got the tube.  I don't have a dishwasher (because I think they're silly for a two-person household on a planet with an energy and water scarcity problem) so I would thoroughly wash with super-hot water and detergent immediately after every feed.  Rubber stoppers didn't last long, I can tell you.  Now I just do a super-hot rinse each time, with a detergenty wash once a day.  If I'm out I don't even bother and rely on the flushing water to do a good enough job, but then I'll only use that syringe for 2 feeds or so before washing it properly at home.  Or, I use 'old' ones I've saved and treat them as disposables.
Many people just toss them in the dishwasher.  Others will mainly use cold water, and I can see the scientfic sense there as heat does coagulate proteins, so hot water may in fact be making it harder to clean.  As I said, there's no right way.  What I can say is that my syringes last longer now, and are no more stained, than when I was more full-on about their care.

5)  Well, what's the best way to use the syringes then?

Preloaded salvo method?
Plug in/pour/plunge/de-plug/close tube/unplunge/plug in and repeat method?
Or draw up rather than pour?

Everyone does it differently, and like everything, what works best for you is what works best for you.  I know a few dishwasher users who pre-load a whole feed into syringes - say 6 or so - and just plunge them one after another.  All in the dishwasher, quick lube spray when they come out, all done.  You need a lot of syringes going at once for this obviously.  I do the second method above, but depending on the blend and how I feel I'll dilute a bit and let gravity do the plunging - so much easier.  Some people don't pull the plunger out, but draw back the feed with it and reinsert.  I even know of someone who doesn't use syringes anymore!  They use squeezy sauce bottles, large enugh for a whole feed.  Insert directly into tube end/extension, squeeze, momentarily remove for the bottle to 'breathe in' again, and repeat until all done.  Genius, really.

As always, please let me know what I've missed, what I've got wrong, and all your useful bits and pieces.  May your syringes last as long as you want them to.