Feeding Part 2:
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
With Feeding Tubes
Part 2: Treatment Programs
With Feeding Tubes
Part 3: Making The Transition To Oral Feeding
For Children Who Receive Tube Feedings
Here are links to some information for those considering a feeding tube
for their child:
Tube Feeding for Children
some links to information on the specific tubes that are available
Links previously on this
page no longer work. The most commonly used feeding tubes for children
are the MicKey button which is made by Ballard medical. The other
popular one is the Bard button.
button feeding tube is the AMT mini button
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
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
Other pages in this section
Tube Feeding Experiences
Oral Feeding Experiences
Feeding tips and tricks