Hi Heidi --

You know, I wondered why they did not use some kind of implant to which you simply attached the tube while feeding and which would be much less vulnerable to being pulled out. Seems a better solution, especially since several of the patients we see every day are obviously going to be on their tubes for a while. Nice to know they are available, now why not used more? Will ask nurses.

In any case, Barry is peg-less and will be so he has to EAT -- so far OK, he's not even on the strongest pain-killers yet. Will see what the next weeks bring...

Gail

Unfortunately, even the implanted tubes can come out. About 14 years ago, my husband was hospitalized for weeks with a major G-I problem and was restricted to IV/TPN feeding through an implanted tube. Even after he came home, he still had to use it exclusively for awhile, and one night the implant popped out at about 3AM. I immediately got him into the car and drove to the ER in a panic, and they calmly decided that he could get back onto soft foods at that point and left the tube out.

Cathy

Cathy,

I am a little confused... IV nutrition/TPN feeding is through a surgically placed central line (or PICC line) into the blood stream (my son has been getting most of his nutrition that way since he was an infant) and a feeding tube goes through the abdominal skin to the stomach and uses a formula. You would NEVER want to put formula in the central line, nor TPN into the stomach...

Gail,

the gastrostomy buttons I have the most experience with are the AMT mini button and the Mic-Key button, both use a water filled balloon to hold it in place. There is also the BARD button but it requires a physician to place it and change it, and it causes some discomfort. It can however be left in for a year or more. I know there are other brands out there, I am just not as familiar with them.

Heidi (daughter in law to the bravest woman I know... oral cancer 6 yrs ago, esophageal 3 yrs ago, skin earlier this year and rediagnosed with oral this week)

Heidi,

I probably should have clarified a bit -- when he was first in he had a conventional IV hookup, but when it became clear he couldn't have anything by mouth for an extended time, they put in a surgically placed line. It was that line that came out, notwithstanding the fact that it was deeply embedded (or so we thought).

Cathy

Ok, I understand now Cathy! I am used to calling the central lines either lines or CVL, not tubes.

I have seen those lines come out as well, many of the children and young adults on my TPN listserv have had that happen, and we have found that keeping a close eye on the length (measuring the length with each dressing change)of the line so you can see if it is pulling out is a big help. They do make some that are tunneled under the skin, they have a velcro like cuff on them that is "supposed" to keep it from slipping out, but there also some that have to be stitched in to remain where they are supposed to... those tend to be the ones that fall out. I never could figure out why the docs use that kind anyway if it was supposed to be a long term placement.

Thankfully Sean's have never fallen out, though his first baby line broke 9 times during the year he had it! It actually handled that many repairs though, so we were thankful not to have to have him go through surgery again and again.

Heidi

{I don't like OUR (non-professional) suggestion that these tubes can be re-inserted by the patient! If anyone else reading this has a problem with a tube that comes out PLEASE CONTACT YOUR DOCTOR!!}

Shawna, The reason I posted that is because of these three comments:

{"On our last night there, she pulled it out in the middle of the night. We still managed to re-insert it, tape it and begin the 14 hour journey home."}

{"The MD explained that the balloon would deflate and to just put it back in and tape it in place."}

{"RO resident said "they will just stick one back in the same opening, won't need sedation or fasting""}

My comment was not intended to offend the writers. Please remember there are possibly thousands of readers of these forum pages. For some, English may not be their primary language. This page will be here on the forum for many months and might be found by a search. A casual read of the above sentences might have someone believe that these tubes can be put back by the patient in every situation. I do not think it is a good idea to assume that is true. I do believe it is an issue that the individual needs to discuss with their doctor.

My words "non professional" are not to be confused with un-professional. In addition, I know that some of you folks really are in the "profession", just a reminder that people should not rely on the the information here as professional advice. (even if it is better than their own professional gives)

Hi all --
I was a little leery of "just sticking it back in" as well -- OK, obviously through the abdominal stoma is easy but how can you be sure that it is back into the stomach? The stomach wall was being held against the inner abdominal wall by the peg -- once out, there is no easy way to be sure the two holes are still aligned. I wouldn't be very happy about pouring 8 ounces of Nutren into someone's abdominal cavity! That's why Hopkins insisted on re-doing it with empty stomach, so they could be sure to get the peg back into the right spot using endoscope.

In any case, Barry's doing OK -- he ate over 2000 calories yesterday (lot easier to do on non-treatment days) and is into his 6th week so we are keeping our fingers crossed...

Gail

Gail,

my understanding is that as the stoma (the area that the tube goes through from the surface of the abdomen to the stomach) heals the two begin to grow together. once it has been in 6 weeks or so they have healed enough that as long as you get a new tube in fairly soon (like within a few minutes) there should be no real problem.

No matter what however, you should always follow doctor advice. Whenever my son or MIL get a new "appendage" or appliance I make sure to ask the docs what I should do if it fall out, has a complication I do not understand or know already how to deal with, etc. Thankfully we have never had a problem that wasn't fairly easy to fix.

Heidi

Barry's tube had only been in about 5 weeks, and there was a lot of range of motion so it looked as if the stomach and internal abdominal wall were not healed together -- in fact this may have contributed to the failure, who knows?

Anyway, so far so good re his eating -- and only 7 more days! (Of course we know that it will be a long uphill from that last day of treatment...)

Gail

And to clarify...

My mother had days if not weeks to live and our choice was to cancel the final trip of her life and with the guidance of the Department Head of the OB/GYN Oncology unit of UT Southwestern Medical Center (the next NCCN member) we re-inserted the tube and had our next door neighbor (family physician at a medical system that uses UT Southwestern physicians exclusively) come and review the process and examine her prior to the trip.

In my case, my stoma healed within minutes after removing my Mic Key. I called the doctor after I got my car from the parking garage and asked when it would be okay to eat and he said now so I stopped the next block and had lunch...fried chicken!

Ed