Hi,
 
>In several letters to the list lately I've seen reference to a
>gastronomy, or feeding tube.  Could anyone tell me what is involved with
>using one?  How is it put in?  Is it permanent, or inserted at each
>meal?  How much expertise is needed to feed a patient using one?  Can the
>patient eat in any other way once a tube is used?  My mother does more
>choking than swallowing, and is losing weight.  It takes her so long to
>even eat a little, that she is quickly too tired to finish taking in the
>amount she needs.  She tries to eat often,  but we should know about what
>may be yet to come.  Thanks.
 
Our experience with my Mother (now deceased, diagnosed with MSA at autopsy,
this all happened about 5 years ago):
 
- It became apparent that mum was choking badly, and a significant quantity of
  her food was going into her lungs because her swallowing reflex was
  deteriorating. Basically she was drowning in her food.
 
- Initially they gave her an NG (naso-gastric) tube which goes in the nose and
  into the stomach. I understand there was reluctance for the gastronomy because
  of a risk of infection, and that the NG tube was done as a matter of urgency
  on the ward - you can just put the thing down, gastronomy requires an
  operation.
 
- Down the tube went most medications and food - liquid feed which smelt
  horrible. Understand it was stuff they give to burns victims etc. when they
  can't eat. Generally she got this over night, although we did have it on
  during the day if needed. (hooked up to back of wheelchair - the pump is
  battery powered). The feed sits in a bag and the pump shoves a little into
  the tube every few seconds. You need to make sure you stop the pump before the
  feed runs out or you pump them full of air which isn't very pleasant, though
  not dangerous in small quantities.
 
- She did continue to eat "normal" food, but only when "on" and closely
  supervised - she choked often. Generally she eat for pleasure, not nutrition,
  so we tended to pick nice interesting foods - in both taste and texture. e.g.
  dark chocolate ice cream.
 
- The amount of fluid she took during the day was often a cause for concern,
  we would often stick a 100mL of water down.
 
- The connections for the tube etc. was quite fiddly - normally we helped her
  with it, although in extremis she could do it herself.
 
- When we got the NG tube, the doctors agreed that if it ever blocked, she
  would go into hospital and have a gastronomy. Heh! Mum never liked the NG
  tube - it looked horrible, was uncomfortable, and got in the way. One day,
  when it was just me and her, the tube "blocked". So I set all the wheels in
  motion to get her into hospital for the operation - it was a day surgery
  procedure at one of the London hospitals. The situation was quite serious,
  I could get some drugs down but not much, certainly no food. Once things
  were arranged, the tube miraculously "unblocked" - and Mum grinned! She did
  have a lot of style my Mum :-)
 
- The gastronomy was much more practical and comfortable than the NG tube.
 
- Once you understand the pump and tubes it takes about a minutes to set up.
 
- We managed to get liquid versions of most meds., crushing the others wasn't
  a real problem.
 
- Sara Byron mentioned that they have to look after the incision in the side
  of the stomach ("cleaning the area and applying cross-cut gauze around the
  tube regularly"). We never had to do that - only for the first week or so.
  And in around 10 months we never needed another tube.
 
I think all in all, although the feeding tube was a bit more hassle to deal
with, it was a definate bonus. Takes the pressure off eating - you get all
your nutrition through the tube and can eat for fun. No worries about
choking etc. (choking is a common cause of death in PD patients).
 
So a gastronomy definately increased our quality of life. "Don't delay, get
one today!" :-)
 
 
Simon
 
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Simon J. Coles                       Email: [log in to unmask]
                                Home Phone: +44 1932 220073
                                Work Phone: +44 1344 778783
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