Tube-fed Growing Baby
Our 13-month old son Thomas had heart surgery and now has a severe oral aversion. He has a feeding tube while he is learning to eat by mouth again. Our problem is that Thomas is getting more active and sitting up in bed, etc. We have the tube from the extension taped and tucked under a roll of blanket with just enough room to roll a little bit from one side to the other. How do most parents deal with the extension and tubing in bed? Tape it to the child’s leg? Put in his/her pajamas?
— Kevin & Sherrie Fischer
Our first recommendation would be to contact one or more of the following Regional Coordinators. They have children and should be able to talk to you about their experiences.
• Donna or Richard Noble, parents of 7 y.o. Kyle on TPN and tube feeding; (614) 871-8464, donnanoble2001@yahoo.com
• Ann Weaver, mom of 10 y.o. Tim on tube feeding, was on TPN; (630) 335-2613 amweaver@wowway.com
• Patty Woods, mom of Colin, on both TPN and tube feeding; (951) 766-5145; The7woods@adelphia.net
We also have information at the Oley Foundation about some specialized clothing, belts, straps or clamps that might be helpful. Call Cathy at the Oley Office for further information.
Odor Problem
I recently had a new J-tube placed. It is the kind that is just popped into the opening and held in place by a balloon. It is working just fine for me, but unfortunately it puts off a terrible odor.
Do you have any suggestions as to what I could do to reduce this horrible smell? Some days it seems to be worse than others, not sure why. Maybe it’s just that I’m more distracted and just don’t notice the scent.
— Sue McKallor
(410) 721-3075 or smc@riva.net
Oley’s Medical and Research Director thought the odor is likely stemming from residual formula and/or medications stuck to the inside wall of her tube. We recommend cleaning the residuals out of the tube by squeezing it between two fingers and running them along the length of the tube from the site to the end; disposing of the gunk that comes out, then flushing with water. A similar technique is to place the tube on a table and run a flat, blunt object along the tube to squeeze out the residuals.
Oops!
Our apologies for a typographical error in the September/October “TubeTalk.” Diane Owens is of Irish descent, in addition to being a decent (really great) person.