Christine
In this instance, "hijacking" is too harsh a term. I am shocked and disappointed over how your doctors used a technicality to not fully inform you. Of course there is no G/J "button" technically since the jejunum requires a tube instead of the button for additional displacement of the formula compared to dumping it right into the stomach. However there is a low profile G button with a J tube that is completely hidden and for all intents and purposes is a "button".
Please email them this link to a commercially available, highly rated combination Gastronomy /Jejunum low profile feeding tube.
G/J low profile feeding tube While you would still want your doctors to do the installation, you would be free of that damn swinging cat's tail that we have both suffered through plus never have to worry about accidental leakage again.
A recent Tubie expert from Australia who just died (he was a tubie forum superstar and very nice to me) described it this way in his e-book.
[quote]Just a minor surgical procedure, one of a dozen or more a busy surgeon might do in a day. All too often, after-care is treated the same way; just a routine medicalized matter. Here�s the tube, take it home and live with it. The doctor or a dietitian will prescribe you a set amount of feed, most likely a commercial preparation commonly called simply �formula� and that�s it.
Having a new permanent tube in the family is more life-changing than that, and it deserves a bit more support and understanding. In an increasingly specialized world of medicine what so often seems to happen is that no one person, be it a doctor, nurse, dietitian or whoever, ends up taking responsibility for all the care and follow-up that�s needed for every patient and caregiver, so it just sort of slips through the cracks.
Also, what little information the medical community does provide can vary from place to place, is usually a one-size-fits-all approach rather than a tailored set of guidelines for your unique situation, and in far too many cases can be frankly dispiriting, overly limiting, and disempowering..[/quote]
It's bad enough that we still bear all the aftereffects of radiation and chemotherapy but to easily know more than our own doctors about feeding tubes is quite sad.
Charm
