PEG feeding amounts?

KinzaDAF · 10-07-2009, 11:32 AM

My father got his PEG on Monday, was kept overnight at the hospital, and then was released yesterday. Mom and Dad were supposed to have seen a nutritionist before Dad was discharged, but though my parents waited and waited, no one ever came. Mom says it's a good things she'd taken some notes down as the nurses were showing her how to care for the tube and do the feedings. A home health nurse came out today and showed Mom a few things, checked to make sure Dad is doing ok, etc and will come for five days I think. Mom has no idea though, how long to keep up the regimen the nurses at the hospital were doing, whether the amount they were giving was to *maintain weight, or to help him *gain weight or what. ( Dad had lost at least 10 pounds I think. ) I offered to call the docs and get some info but Mom doesn't want me to do that...doesn't want "too many people" calling. Sigh. I told her I'd ask here, hoping maybe someone can shed some light on what should be done from here on out. ( I have a dietician friend I think I will call too. ) Dad was given a formula called Jevity ( 1.2 cal. ) He was to be getting 240 ml. every 4 hours, six times a day. ( Mom thinks she is supposed to be giving it during the night too?? ) Feeding is to be followed by a flush with 160 ml. water. Can anyone tell me about how things are supposed to be done for the first weeks following getting a PEG? HOw are you supposed to figure out how much the feedings should be, and how can you know whether the amount will maintain weight and/or help someone *gain weight?

Debbie

BarryG · 10-07-2009, 12:26 PM

Hi Debbie, I am glad that your dad now has a peg but it is really too bad that he hasn't had much follow up as far as how to use it. I had a similar experience when mine was installed, I was in hospital over a long weekend and all of the dietitians were gone away so we took the information that the nurses gave us and went home. We did get good follow up from the dietitian later do we were able to find out how much formula to take to maintain weight and how much to take to gain weight.

A while back I started a thread about calorie calculators, maybe it will help you help your mom and dad so here is a link to the thread:
Calorie calculator websites

Does your dad go to an ALS clinic because they usually have a dietitian that can help or maybe the local ALS association can help out.
Good luck
Barry

MarianneS · 10-07-2009, 12:38 PM

Hi Debbie,

Yes it is a totally new way of eating. Whe I was discharged the orders said 5 cans a day. Initially that was way too much so I started with three cans for a few days and went to four for ten days and beginning this week am now doing five cans. I feed myself four times a day and do one and a quarter cans. I try to take in additional water as well. I hope your mom questions the nurse, remember no question is silly and I don't know if you are nearby and be with her when she phones the dietician for more information. It has been three weeks since I had my tube placed and I still have questions. Good luck.

Marianne

mytwoboys · 10-07-2009, 01:26 PM

Hi... If I remember correctly from Barry's map - your dad lives just down the road from us in Circleville. Did he have his procedure at OSU? My husband had his there in early August. I waited hours for the dietician to finally get to us with instructions (I had to start threatening to leave my husband there because I had to leave to pick up the kids from latchkey). That got things moving. Guess they wanted him out. Anyway - my husband has lost about 45 pounds. He did weigh about 185 when all this started in 2007. We were instructed to give him 2000 calories per day - food, formula, or both. I'm sure the calorie calculator in an earlier post will help too. It's still a struggle to get 2000 cals in him every day, but having the tube is helping get more into him. It would take upwards of 45 minutes to finish a bowl of cereal. I can now put 600 cals in him in 15 minutes. Take care.

KinzaDAF · 10-07-2009, 01:47 PM

Yes, mytwoboys, my dad lives in Circleville ( My mom has posted a couple of times...name is almasch on her posts. ) and had his procedure done at OSU. I think my mom is just feeling so overwhelmed by everything right now that she just doesn't "feel" like calling OSU and bugging them for the information she needs. I could tell she is frustrated though, when I talked with her on the phone this morning. Mom and Dad waited all day yesterday for a nutritionist to come and finally just left the hospital after the nurses hurried them along, so much so that Mom forgot and left Dad's Rilutek there. ( A friend is picking that up and taking it down to Circleville later today. ) Based on what Mom says the nurses were giving Dad in the hospital, he is to be getting 1440 ml. per day, but I don't know how many calories that is. The only thing I have to go on is that Mom said this Jevity stuff is "1.2 cal" so maybe that means it is that many calories per ml.? I'm *guessing that Dad weighs around 140-150 pounds. I think. Sigh. Should I push Mom to call the docs for information? Or maybe have her ask the visiting home health nurse to do so *for her? You said that you managed to get things going finally. Did others here have problems getting nutritional information after PEG procedures too? Is this common ? How the heck are you supposed to know how many calories to give a person?! ( I will check out those calorie calculators. )

Debbie

BarryG · 10-07-2009, 02:34 PM

Debbie, how much did your dad lose? It is probably not possible (or desirable) to regain all of the weight that was lost but it is a place to start and will give you a goal anyway. Once you know where you want to be it is easy to use the calorie counter websites to figure out how to get there.

You are right about the calories per ml, the stuff that I "eat" is Nestle Resource 2.0 which is 2 calories per ml so a 237 ml tetrapack box gives me 480 calories and 20 grams of protein. I am now at 135 pounds, up from 117 in Feb pre peg but down from 150 to 160 pre ALS. I now consume 4 boxes of formula per day along with whatever else I can choke down which is not much now. The thing about formula is that the more calories they can pack in per ml the easier it is to get lots of calories without feeling over full or bloated.

I just want to add that I am so glad that people are using my Google map to find each other. Thanks, mytwoboys, that is what it is for and that is why I do it. I have a degree in geography and really believe that who we are is so connected to where we live.
Hinton, AB - Google Maps

Barry

mytwoboys · 10-07-2009, 03:16 PM

Debbie,
We actually live close to "roundtown" about 10 miles northeast of them. I can sympathize with your mom feeling overwhelmed. I am trying to deal with my husband's near complete incapacitation, home care, full time job with a 45 minute commute, a 10 and 7 year-olds, school activities, kids sports.... I average about 3 phone calls a day just about his "stuff". It was a wild ride after the PEG went in - everyone wanted to help - nurses, PT's, RT's, OT's,social workers,nutritionists, hospice people. 11 calls in one day alone. I just about lost it. That lasted about a month. Things are calm now and we are in a routine. The formula we use has the caloric info on the back of each can. I doubt my husband will regain any of the lost weight but at least we can hold on to what we have. Our challenge now is that his aide is not allowed to do tube feedings and he is close to not being able to take food by mouth. Bring on the pump ! Technology is making a lot of things manageable. Tell your mom to hang in there.

Barry -
Thanks for doing the map plotting - it's made some of us feel "less alone" knowing there are others close by.

mytwoboys · 10-07-2009, 03:24 PM

Debbie,

Just wanted to add some more info. Once we got home from the hospital, the dietician from the company that was shipping us the formula called - it was a couple of days post-discharge. They were checking to see how it was going. Has your mom received any shipments yet? Ours is auto-shipped - it just keeps showing up on the porch. Case after case after case. The dietician calls every couple of weeks. Your mom could check with the company supplying the formula - they should have resources to help her if she doesn't want to bug the doctors - they can be hard to get a hold of. I hate calling OSU - I end up on hold for frustrating amounts of time just trying to get through to someone. She might have better luck with the formula supplier.

KinzaDAF · 10-07-2009, 05:31 PM

Thanks mtb! I don't think Mom has gotten any shipments yet but she does have a place to order it from. I ended up calling a friend who is a dietician and she kindly offered to call Mom tomorrow and help her figure some things out. I bet you are reight though, that probably someone from the formula company might be calling soon. Maybe someone from OSU will call too, who knows? It sounds like YOU have your hands full TOO! What a schedule you have! I don't know how you do it and I don't know how my mom will do it either. I wish I lived closer so I could be of "real" help. Maybe at some point I'll find a way to be there for her ( and Dad ) as things get more complicated. It is nice to know there is someone else who is sort of nearby, who understands this disease...I hope Mom comes here to post and can "meet" you. Having support from others is so very important. I am so glad to have found this forum and all of you kind people.

Debbie

mytwoboys · 10-08-2009, 09:01 AM

Debbie,
Since your parents live close-by, I wouldn't mind hooking up with them sometime if time allows or there is a need. I'll monitor this thread and we can exchange personal contact info if you/they want. I'm still kind of new at this posting/forum stuff and not really sure how to establish personal contact.... There is another guy here in Canal that also has ALS - I met him at the MDA support group. He used to work at the metropark around the corner from us.

KinzaDAF · 10-08-2009, 10:42 AM

That would be great. Mom is very new to this "posting stuff" too! I keep encouraging her as I know she is going to need/appreciate the support she will find here. I will PM you mtb.

Debbie

KinzaDAF · 10-10-2009, 04:37 PM

My dietician friend has helped develop a feeding schedule for Dad that should help him regain the weight he has lost. The schedule is for five or six feedings ( I forget which. Geez. ) spaced throughout the day. ( This is what the hospital had been doing too. ) Dad takes Rilutek too, which has to be taken on an empty stomach, so there are a couple *more "procedures" to add to the schedule. I think Mom is a bit overwhelmed. I want to ask people here, how often do you give yourself ( or have someone give you ) tube feedings? Do you ever ( and how often ) do you take in anything other than formula? ( Real food? Put down the tube? ) I am hopeful that maybe the number of feedings can be decreased ( and amounts given at a time be made larger ) as time goes on and Dad regains his weight. ( Dad just got his PEG this past Monday, so it has only been 5 days. ) To my knowledge, no one from the hospital ( like the nutritionist they PROMISED would talk to my parents ) has even called to go over these kinds of things with Mom. If it wasn't for the notes Mom took at the hospital as she watched the nurses, and the help of my dietician friend, Mom would be lost. Can I tell her that the number of feedings can eventually be decreased? Can "regular" food be pureed and added too at some point? Thanks for any information!

Debbie

mytwoboys · 10-13-2009, 01:14 PM

Debbie,
I can only tell you what I do for my husband. He still has a "regular" lunch and dinner - I am trying to keep him eating by mouth for as long as possible since this disease has taken away pretty much everything else - at least he can taste his favorite foods. I use 2 cans of formula in the morning plus 2 syringes of water - 1 before and 1 after. He has not complained of feeling too full with the 2 cans - or maybe he's afraid to tell me since I am so pressed for time in the morning - the 2 cans usually go in in 10-15 minutes. How much at one feeding would probably depend on how your dad feels as the formula is going in. And I don't know how fast the stomach digests the formula leaving them feeling hungry again. As for regular food pureed and put through the tube - I know people do it - they have referenced it in many other posts in this forum - but there are certain foods that tend to clog the tube. As a CALS - I'm not sure I understand why someone would do it since you can't taste it - maybe someone can comment on that. Our goal is just over 2000 cals per day - that - and him not feeling hungry all the time.