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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 for Children
http://www.pedisurg.com/PtEduc/Tube_Feeding.htm

Here are 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.

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 Tube Care
http://www.cincinnatichildrens.org/health/info/abdomen/home/g-tube-care.htm

Gastrostomy-Jejunostomy Tube Care

Gastrostomy Feeding by Syringe

http://www.cincinnatichildrens.org/health/info/abdomen/home/g-tube-syringe.htm
 

Continuous Drip Nasogastric Feeding with Pump

http://www.cincinnatichildrens.org/health/info/abdomen/home/continuous-drip.htm


Continuous Gastric, Jejunal, Nasojejunal, or Nasogastric Tube Feeding with Feeding Pump and Farrell Valve

http://www.cincinnatichildrens.org/health/info/abdomen/home/gastric-jejunal-nasojejunal.htm


Nasal Gastric Bolus Feeding

http://www.cincinnatichildrens.org/health/info/abdomen/home/nasal-gastric-bolus.htm


Nasojejunal Tube Feeding with Kangaroo® Pump
http://www.cincinnatichildrens.org/health/info/abdomen/home/nasojejunal-kangaroo.htm

Other pages in this section
Feeding & Positioning
Tube Feeding Experiences
Oral Feeding Experiences
Feeding tips and tricks
Reflux
Feeding Glossary


 

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August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca