Carol gets her PEG Monday. She hasn't been able to get her daily calorie intake due to her swallowing issues. But she hasn't lost a lb (yet) during the last few weeks. I have asked about the PEG in general on an earlier post, receiving advice and suggestions (thanks all) but I have a few more questions. If these questions have been answered during previous posts I apologize, I've been digging and haven't seen any. Time for an eyeball check?

How do they decide what size PEG to use? From what I have read here and on the net 16 FR and up is better to best. 14 FR is okay (not too convincing) and 12 FR too small. 16 FR would seem to be an ideal size for Carol's liquid, blended/pureed food and med intake. I'm thinking of post tx besides pre tx and in tx.

What is FR and the comparing of the number to an object size a lay person can relate to (inner diameter) for feeding and outer diameter into body)?

Where, outside from the Drs., can I find the 6" Ace bandage w/velcro? Wally World, Target doesn't have them. I haven't checked Walgreen's or CVS yet. The Ace sounds as if it has a HUGE advantage over tape and its issues. One less thing to contend with while Carol battles this disease.

What size gauze pad? Would it depend on size of the PEG tube (outer diameter)? Pre-slit pads seems to be a tad more expensive and the slits don't really fit the tube too well? I'm more than willing to cut slits myself to ensure a good (or better) fit.

The questions will be answered Monday but Carol would like to go in armed with some info. I am aware of posters views regarding PEG or no PEG, however Carol needs a PEG due to her swallowing problems that were occurring before she was dx'd. She isn't keen on the J-tube (?) even though it would help against aspiration. (She's had pneumonia and bronchial pneumonia in the past).

Just to let everyone know, you all ROCK!!!

Linda

Linda

DOES SIZE MATTER?

Perhaps not in Urology but in Interventional Radiology, the answer is YES. While the difference between a 12 and 14 FR PEG tube seems very small, the impact is large. The smaller the tube, the slower the feed and the longer time it takes to finish a can of nutrient. A patient on six cans daily of Jevity 1.5, will be tethered to a gravity feed with a 12 FR FOR AN HOUR A DAY LONGER than if he were on a 14 FR. The average increase is ten minutes a can longer with a smaller 12 FR. Additionally, some denser cans that have over 500 calories a piece will not even go down a 12 FR tube without clogging but require a 14 FR as a minimum for gravity feed.

TECHNICAL EXPLICATION. .
Each unit of French size = 0.33 mm, so a FR 12 rounds to 4 mm while a 14 FR rounds to 5mm. French size refers to the *outer* diameter, not the inner diameter which determines the rate of flow. Due to tubing wall thickness, the inner diameter is always smaller than the FR measurements.
In American measurements, a 12 French has the outside diameter of a 5/32" drill bit but an inside diameter of only a 3/32" drill bit. When you do the math, the smaller 12 FR tube has only 75% of the 14 FR�s volume capacity to transport nutrients.

I have had a 12 Fr, a 14FR and just got a 16FR PEG three days ago. If Carol is using anything besides the canned food, she needs at least a 14FR but my new 16FR is much much better.

Also, this time I got a PEG tube made by Mic-Key which has a silicon ballon to hold in the PEG instead of the stitches used on the Wills-Olgesby or Mallinckrodt and it is much more comfortable. It even comes with a little plastic protector that you can put antibiotic cream under and not have to worry about staining clothes. In the oftchance that you are offered a "button" or flat panel. Stick with the PEG tube for now as it turns out the "button" which all the Gtube listsev people love actually has a very small valve (anti-reflux) which clogs more easily.
Charm

The soft ace bandages with velcro are available at CVS and Walgreens. They usually have a picture of wrapping a knee so they are pretty long but that is good to give you length to wrap around the torso a couple of times.

The slit bandages were good for Bill's Peg...I have no idea the kind he had...certainly large enough that we had no clogging issues. His had a button at the stoma area...I would just slip the gauze pad under the button and around the tube. I was always careful not to handle the pads a lot...trying to keep bacteria off the pads so I would assume that cutting them with sissors might introduce more pathogens. The area under the button does not get a lot of air and the stuff that oozes is thick so it's a great place to have an infection. Bill never had one but we were pretty digital about cleaning under the button with saline and putting a new pad on every day.

Maybe there is a souce for you to get enteral feeding supplies for Carol...that would be a help with the costs. All of Bill's supplies and supplements were paid for by our insurance company and we had a home health agency that oversighted this. I would see if anyone can help with this.

Deb

Linda,

Definitely shop and compare on formula for the PEG. The place I used at first charges $1 more PER CAN than the place I think I'm switching to. Very often, a Sam's or Walmart, drugstore chain or grocery store chain can order the formula for you - I plan to look into that for my needs.

Call insurance co. to make sure they cover enterals (formula you'll need). Mine did last year, does not this year (we switched the type of plan we're on at work, but not providers).

Again, I LOVE the way you're getting it all together for her; it's great. Soldier on!

- Pam

Charm, LOL. I asked and I received! I do have a tendency to have the need for very detailed info, how each and every nut and bolt makes something work. I do truly value your comments.

Deb, I checked the Walgreen's near my house yesterday and they didn't have any ace bandages w/velcro. I did see wraps for the knees but skimmed past them. Tunnel vision. Your concerns about pathogens is right on. I hadn't considered that if I was going to cut the slits in the pads myself. Gotta keep everything sterile. Thanks for the wake up call. The enteral feeding supplies will be discussed tomorrow.

Pam, From my understanding the RO will be prescribing Jevity and Carol will be getting assistance for formula but was warned the supply would probably run out before she was provided with her next quota. I have been shopping for the best bang for the buck, but it is absolutely ridiculous the prices they are allowed to charge people considering how its packaged.

I appreciate the "kudos" but the kudos should go to you, Pam, and everyone that has the courage, fight, determination, "I'll be damned if" attitude to fight Oral Cancer, Cancer and all other diseases that insist on testing the human spirit. This is a very humbling experience for me but also feel proud that Carol has such trust and believe in me to be by her side while she battles the beast. My hat goes off to all.

Linda

Linda,

If you can't find those ace bandages, let me know and I will find some for you and mail them to you. They were that helpful to Bill so I know they make a difference in comfort levels both physically and mentally (because the tubing is tucked safely and doesn't dangle, etc.) Let me know..I am sure I can find some for you.

Also, to be very clear on enteral feeding supplies...I don't just mean the formula/supplement but also pads, tape(ugh..don't use), large syringes, etc. All from one place so you don't have to run around to find them. Obviously, medical supply places will have that as well.

Deb

Hi Linda. My husband couldn't stand having the ace bandage around his stomach so he just used medical tape for sensitive skin and never had any problems. He had the PEG in for 5 months. The Radiation Oncologist's nurse called and arranged for the home delivery of the PEG "stuff". They home delivered cans of "food", syringes, gauze pads with the slit already in them, pump, pole etc. Don't be surprised if they don't give you much information on the care of the PEG. It's good that you are looking into all this now. I felt so lost when John had his put in. I asked the people in Interventional Radiology where he had it put in and also the nurses in the Short Procedure Unit where he recovered and they were all clueless as to how to take care of it. Hang in there!

Carol went in for her PEG yesterday and after getting prepped she was rescheduled for tomorrow (1/27). The procedure was to sedate Carol, go through the stomach, return in 4 days for suture removal. But after I told the Dr. Carol couldn't open her mouth, stick out her tongue and her throat was constricted, another Dr was consulted, looked at the CT Scan then the decision was made to put her under. However, no anesthesiologist was available.

What we did find out for sure is they use 18FR PEG and the lack of knowledge regarding PEG care and use.

I am really glad I am there w/Carol to give and receive info. Carol is really glad I'm there. They were starting to scare the hell out of her. I still feel like I am the outsider, getting treated as same, in all this but once Carol opens her mouth (or tries to) attitudes change. What a shame.

One day at a time.

Linda

Charm, thanks for the info on sizes.

To my surprise, my old j tube was an 18. Today I had a new one put in. When I told my doc I wanted a 16, not to give me a crappy one like I was getting rid of. The doc looked at me smiled, then he said "My dear, you had an 18 all along". It only lasted 2 months before I started having problems with it.

Its really not a big deal to have your tube changed. Mine was a bit messed up somehow it was all wrapped around in my stomach. I know it sounds funny. Its a great feeling having a new tube

Christine

It's sort of a Sad commentary on oral cancer, that getting a new tube does feel so good. Still, it is a great feeling to have a new tube. I hope to upgrade to an 18 FR this July. I just syringed down my wife's first Vitamix concoction - Peanut Butter, Brown Rice, Yogurt, Whole Banana & Milk - which came out close to my Jevity 1.5 calories. It was great to burp up peanut butter taste
Glad they fixed you up.
Charm