This will only be of interest to those dealing with dysphagia (swallowing problems) and who are open to the idea of a feeding tube.
Personally, I never understood what the big deal was about getting a feeding tube during the time period when quality of life is still good. When my Dad (with progressive supranuclear palsy) stopped eating and drinking over a week ago (he reported that it was too fatiguing to chew and swallow, the swallow was delayed by 5-15 minutes, and quite a bit of chewed food was spat out because he couldn’t perform the swallow), I started mentioning to a few people that I was looking into the ins-and-outs of a feeding tube. Many of the people not involved in healthcare took it to mean that he was at the end of life. I guess that’s why they got so upset talking to me and wanting to know if I was OK and if we were ready for hospice. So I’m not quite sure how to bring up the topic anymore. Basically, I view the feeding tube in the same way I view the walker or wheelchair — it makes life a little safer. He said he wanted it. And if I were he I would want it as he still has pretty good quality of life.
Anyway, I can report to you today that my Dad had surgery this morning (with Versed, a sedative, and fentenyl, an analgesic, both given via IV). (They initially said they’d be using the intravenous anesthetic propofol. I said “what about the 1/23/07 issue of Biochemistry which indicated that propofol leads to amyloidbeta peptide aggregation in the brain?” The MD said “amyloid-beta aggregation is not an issue in PSP.”) A G-J tube was placed. Endoscopy (a procedure using a probe with a camera on the end) was not used. Because most people getting a feeding tube have an NG (nasal gastric) feeding tube in place — it goes through one of the nostrils down to the stomach — and they were unsuccessful in placing such a tube in Dad on Monday, the prep time for the surgery was longer than normal. In total it was supposed to take 2 hours; it took 3. The procedure was done by an interventional radiologist. Normally, the NG tube is used to insert a dye so that the colon is highlighted so it won’t get hit. They, instead, inserted a tube into Dad’s rectum and injected the dye that way. Then they inserted a tube down his esophagus in order to blow air into the stomach so that they could “see” the stomach from outside the body. They had lots of trouble inserting that tube. So much so that the MD asked me later why we were worried about acid reflux and aspiration. She was thinking that if it’s so hard to get things down the esophagus, it must be hard for things to come back up. I mentioned that Dad was at risk for aspiration, based on the modified barium swallow study. After telling her that, she agreed that the G-J tube was better than the G-tube for Dad. (It would’ve been better to have had that conversation beforehand but no harm done.) There is one small tube going into Dad’s body. Inside, the tube splits — one part goes off to the G (which stands for “gastric” and refers to the stomach) and one part goes off to the J (which stands for “jejunum” and refers to the intestine). This small tube comes out of Dad’s body for about 7 inches. (It’s long!) At the end of it is a rather large and firm set of three tubes or ports; there’s a G port, J port, and a Bal port (don’t know what that one’s for yet). All of the feeding, hydration, and medication will occur via the J port. I’m not really sure why there’s a G port. Perhaps as a back-up or something. Right now, stomach bile is draining out of the G port. This is supposed to end at some point (days? weeks?). The idea is that if you can get the liquid further down into the gastrointestinal system, there’s less chance it will back up into the esophagus and therefore less risk of aspiration. The MD said that if there were no risk of aspiration a G tube would be better as the stomach is the best place for the body to receive nutrition and digest it. The MD gave me one tip, which I thought I’d pass on: if the G-J tube gets loose, insert a Foley catheter into the tube, inflate the balloon, and get to an ER soon. The catheter will keep the hole open; if there’s not something there keeping the hole open, it will start to close up. (Note to self: buy an extra Foley catheter and syringe to inflate balloon.)
I’m still learning about the feeding process so I don’t want to say too much about that. Our plan is to feed him over a 12-hour period while he’s in bed at night. (One bummer is that he’ll have to sleep with the head of the bed at a 30-45 degree angle to avoid reflux.) We are very lucky that one of Dad’s feeders has a daughter who has been fed via NG tubes and PEG tubes, so she’s way ahead of us in terms of knowing how to handle all of this. I have some concerns about finding a feeder who can come start the 12-hour feed around 8pm. And I want to try to find a belt or cover so that I can protect the tube and ports as everyone says they can be accidently ripped out. When I learn more, I’ll pass it on.
I haven’t had much access to the internet over the last few days, so I’ve relied on the rather poor info that’s been given to me about PEGs and G tubes by the hospital (in Salt Lake City). Tonight, after the fact, I’ve gone to emedicine.com, which is one of my favorite sources. They do cover the topic of feeding tubes, and the G-J tube (picture 8 looks a little short and small to me). I thought I’d pass on the link to that:
www.emedicine.com/radio/
Percutaneous Gastrostomy and Jejunostomy
Last Updated: March 26, 2003
eMedicine.com