Feeding Part 2:
Tube Feeding
Links to articles with information about tube
feeding which are contained in the book "Caring For Your Child With
Hydranencephaly"
The following are articles written by Suzanne
Morris and are specifically about tube feeding:
Children With Feeding Tubes
Part 1: The Issues
http://www.new-vis.com/fym/papers/p-feed12.htm
Children
With Feeding Tubes
Part 2: Treatment Programs
http://www.new-vis.com/fym/papers/p-feed14.htm
Children
With Feeding Tubes
Part 3: Making The Transition To Oral Feeding
http://www.new-vis.com/fym/papers/p-feed15.htm
Formula
Rotation
For Children Who Receive Tube Feedings
http://www.new-vis.com/fym/papers/p-feed7.htm
Here are links to some information
for those considering a feeding tube for their child:
Tube Feeding Your Child
Thinking about
tube feeding?
http://www.bris.ac.uk/Depts/NorahFry/food/thinking.html
Information on Feeding Tubes
http://www.nnpdf.org/parent1.htm
Tube Feeding for Children
http://www.pedisurg.com/PtEduc/Tube_Feeding.htm
Here are some links
to information on the specific tubes that are available
Enteral Feeding And Specialty Tubes
http://www.bmed.com/products/eftmain.htm (Ballard Medical)
The other brand of tube most often used
in our children is Bard
http://www.bardnordic.com/main/product.asp?sectionTypeID=2§ionID=23
Ross Stomate™ Low Profile Tubes·
http://www.ross.com/productHandbook/devices.asp
Another popular button
feeding tube is the AMT mini button
http://www.appliedmedical.net/amtminibut.htm
A personal word about the different feeding
tubes and pumps that are available:
There are a variety of
gastrostomy tubes in use. The first tube your child gets will probably be the
PEG tube. Once his/her tube site has healed a “button” is often inserted.
Buttons are the most popular feeding tubes as they rest against the skin and
don’t have a long tube hanging out as in the PEG tube or the other older style
tubes (MIC gtube, Foley catheter). Each of the types of tubes has it’s benefits
and it’s problems. The 2 most commonly used among the children with
Hydranencephaly are the Bard and the Mic-key. The Bard button was the first
button available and was originally very popular. The benefits of the Bard are
that it is quite small and sits flush against the skin. Its “antireflux” valve
(what keeps the food from pouring out when the button is opened) sometimes lasts
longer than the Mic-keys’. Sometimes. The main problem with the Bard button is
that it is held in place with a soft mushroom type device. In order to remove
and replace it, the Dr has to stretch the mushroom out and then pull it through
the opening. Most children will receive at least a local or topical anesthetic
to have this done. An obvious problem then, is that the tube needs to be
replaced in the Dr’s office or the hospital. On the other side, the Mic-key is
held in place by a water filled balloon that is easily deflated and can
therefore be replaced at home by anyone who has been trained in the procedure.
As it is always possible for a tube to be pulled out or break it can be
inconvenient having to then take the child out to get a new tube. Especially, as
these sorts of things always seem to happen in the middle of the night or on a
holiday weekend. Another problem with the Bard is that it only comes in 2 sizes,
unlike children.
The Mic-key gtube button
comes in a wide variety of sizes-both length and diameter. As previously stated
it, is held in place with a water filled balloon. These can burst and the tube
fall out but as long as you have a spare tube handy it is easy to do. The
biggest asset of the mic-key is that the tubing locks into place on the button.
For those of you who’s children’s hands are quite busy this is a real benefit.
Of course, then the child can figure out how to pull the tubing out at a
connection too. On the down side with the Mic-key is the fact that it’s not as
flat against the skin as the Bard. The antireflux valve, too isn’t very good and
doesn’t last very long. Despite these problems, the Mic-key seems to be the
preferred tube among the families.
To be fed by either the
Bard or Mic-key buttons a connecting tube is plugged into the button and the
syringe or tubing from the feeding bag is plugged into that. Because the
antireflux valve on my daughter’s mic-key kept breaking I just left the
connecting tube plugged in all the time-it sort of defeated the purpose of a
button as she then had a long piece hanging out but...it worked for us.
As you’ve seen in the
various stories and in the material on tube feeding, children can receive their
feedings in a variety of ways. Bolus is usually a large amount given with a
syringe by gravity. It can also be given in a feeding bag by gravity. The
problem with both of these methods is that it is very hard to control and keep
even the rate that the formula goes into the child. For this reason, most
families are now using feeding pumps. They are very much like the IV pumps used
in hospitals. Over the last few years though, there have been several “portable”
pumps which are quite compact and can fit into a small bag or backpack and taken
just about anywhere. This allows the child to be out in the community and have
no one aware that he/she is being tube fed. I remember the embarrassment of
sitting in a restaurant holding a syringe up to feed a child. When Kayda came to
us, with a feeding pump it was a real relief. Again, there are several different
types of pumps used by the families. The 2 most popular seem to be; the Kangaroo
Pet pump and the Zevex Enterlite pump. The Kangaroo pump was the first portable
pump. It’s ok, and does a good job but is quite fussy and the flow error alarm
goes off frequently and sometimes for no apparent reason. The pump always has to
be upright to flow properly. It fits into a blue bag that can be worn as a
backpack or hung on the back of a wheelchair. The Zevex is smaller and can
apparently deliver the feeding no matter what position it’s in. As far as I
know, the Zevex is more expensive so may be harder to get approval for.
Practical Information For Parents
This section contains parent education
materials from the Children's Hospital of Cincinnati. Not all of their
instructions may apply to your child but I think the general information can be
useful. It gives you somewhere to start in caring for your child with a feeding
tube.
Remembers, remember, remember; How your
child is fed and how fast and how much is very individual. These pamphlets are
guidelines only. If you have any questions please consult your child's Dr or the
person that has been helping you and your child adjust to the tube.
As you will see in the following links,
there are many different types of tubes and ways to feed a child with them. Your
dietician, nurse or doctor will help you figure out which is the best method for
your child and as your child changes through life their tube feeding procedures
may change as well.
Gastrostomy-Jejunostomy Tube
Care
Tube Feeding with
Gravity Feeding Set
http://www.cincinnatichildrens.org/health/info/abdomen/home/tubegravity.htm
Changing
a MicKey Gtube
http://members.aol.com/irrishark/page/
More tube feeding resources:
Tube Feeding
tips and Tricks from the Our-Kids website
http://www.geocities.com/HotSprings/Spa/6889/SNTips.htm#TubeFeeding
Other pages in this section
Feeding & Positioning
Tube Feeding Experiences
Oral Feeding Experiences
Reflux
Feeding Glossary
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