Feeding Tube

[lgelb]

It absolutely can, with BiPAP.

 

[Jimi]

I was on NIV 24/7 for a few years. Absolutely unable to breathe on my own. I had a trach and feeding tube done in one procedure. I had no prob with the surgery. Was in the hospital for about two weeks. I was really pleased with my surgeons. I didn't like the pulmonologist and the ventilator settings and had to go through hell until they finally got things right, but the surgery was easy! I've had the Trach and tube since 9/21

 

[Cherise77]

Thank you! My Dad feels much better knowing there is an option that doesn’t involve being intubated. He had his CT scan yesterday in preparation for his feeding tube. Hopefully his stomach is sitting below his ribs so he can have RIB procedure.

 

[MupstateNY]

Today I had a portal exchange with a Guthrie gastroenterologist about my future need for a feeding tube. Here's the relevant part for what it's worth:

Me: I promise not to wait until my lung measurement gets down to 50%. That's the cut-off figure I read.

Doc: I place PEG tubes as do the surgeons here. It is a two doc job and unfortunately Dr A the other GI doc here is leaving in the next few weeks so it may be better to have the surgical team here do that for you. There isnt a magical number for the lung function really just whenever your docs agree the PEG is needed.

 

[Nikki J]

It is true there is no magic number. However the consensus among most ALS specialists is PALS do better if they get it by 50%. A number of PALS my sister included got theirs later. However the consensus also is unless there is an anatomical reason why a PEG procedure is better PALS should have a RIG which means an interventional radiologist not a gastro or general surgeon

 

[MupstateNY]

After reading about the bitter taste of Relyvrio, I'm thinking maybe I'll cop out and get an early feeding tube, if I can get a doctor to order it.

 

[affected]

Honestly, early feeding tube is one of the best decisions. It is a simple procedure, but any procedure has risks. So having the procedure while you are in as good a physical state as possible really helps.
My Chris held out until he was dehydrated and becoming emaciated. Then he wanted it done urgently (and I pulled some big strings with our speechie and managed to get him done within a month of that). He was terrified of the hospital and could not speak and could barely walk. It would have been so simple months earlier - yep that 20-20 hindsight eh!

 

[Greeneyes]

My brother just had a feeding tube placed a few weeks ago. He is still eating and doesn’t have any breathing problems as of yet. He was loosing more weight so they decided on the feeding tube for extra calories. It was done as an outpatient procedure under conscious sedation through a gastro tube. He did fine and is having no trouble with the feedings

 

[Tammyrogerson]

I got my feeder if tube I was at 50% they used my bpap machine during the precedure. If he is going to get it he needs to go ahead and get it before his % gets much lower. Also he need to use the bpap machine during the day at lease an hour

 

[lgelb]

Tammy, I'm not quite understanding your statement about using BiPAP for at least an hour each day. Many PALS start off using it only when sleeping, when it is most difficult for the body to expel enough CO2. The decision and schedule about adding it during the day is different for everyone.

Case series for RIGs under BiPAP have studied PALS with 17%-25% FVC with successful placement. The anatomy of the PALS' GI tract (like if the stomach is out of place), their nutritional status and oximetry (BiPAP working OK), are all more important to success than FVC, based on studies to date.