To those no longer eating or drinking

[Miss]

How much fluid and how much nutrition (calories) do you take in each day? I am afraid my husband is not getting enough fluid during this transition time. Currently, he is still eating and drinking, but he is taking supplemental nutrition drinks (by mouth) because eating is getting so hard. It is easy for me to give him extra fluid when I give him medications through the PEG, so I just wondered how much is enough. We had his PEG placed privately, and, after 13 months, we are STILL trying to get the gastro consult at the VA!

 

[cervus]

Hi Missy. You should speak to your nutritionist. They will tell you how much formula and liquids to give your husband. It depends on his height and weight and how much and what he's eating or drinking. My husband weighs about 190 lbs and it has been recommended that he has 4 cans of formula a day plus lots of fluids - even 6-8 cups a day. The cans are 375 mls each. The formula doesn't count much as far as fluids go. Around the time my husband started tube feeding for all nutrition, he also started on low dose morphine and along with that, stool softeners, etc. We're still trying to get in to some kind of bowel movement pattern. It's difficult to know how often he should have a bowel movement on liquid formula - we get different answers from different people. The latest consensus is at least every three days. Take care.

 

[Dave C]

I agree with cervus, ask the nutritionist.

Jen gets 4 cans of Isocal 1.5 a day plus about 300ml of water with her pills and supplements. Though she only weighs 125 pounds, i am sure that figures into things

 

[Jellycat]

As I understand it fluid & calories depend on height, weight and activity. My mother was peg only for about a year and a half. She took 1.5 to 2 litres of water per day and 1000 cals. When she was completely paralysed 800 cals was enough, when bed bound less again. Water was always high but then she was tall and needed it for hydration. A dietician if you can get hold of one should help. Good luck.

 

[sadiemae]

Our VA nutritionist wants Les to get at least 64 oz of water or fluid a day. The best way I get Les to drink is by giving him Vitamin Water. They are 20 oz bottles, and I put a half full bottle in the freezer to freeze it into a slushy. I put 6 half full bottles in the freezer each day, and make sure he always has a frozen one at his side to drink. If it has melted and he hasn't finished it, it's put back in the freezer. As far as the nutritional drinks, he should have 5 a day. Our nutritionist wants Les to take 5 cans of formula along with what he eats by mouth. She says the calories are not as important as the fluid intake.

 

[joni51]

Does medicare pay for the cans of stuff to go in the peg?

 

[sadiemae]

I believe so Joni, we get ours through the VA

 

[brooksea]

Miss, My husband was to take 6 cans of Jevity a day, which equals 2130 cals. He was then told to eat what he could by mouth, without endangering himself. I pour gatorade or water down the tube, quantity varies per his request. (I think his stomach has shrunk so much, he can't handle much.) It has been a struggle to get him to accept the tube feeding and I thought I had him convinced, but he just lets me put the water or gatorade in now. Sadly, he has dropped from 200lbs in '06 to 145lbs today.

Joni, Medicare covers the formula 100%. Otherwise, it would be very expensive. Our DME company charges Medicare over $300/month. You must have the PEG, first, or they won't pay. and if he does decide to drink it for a while, after the PEG is placed, don't ever tell a home health care or hospital nurse that he does. They could turn around and notify Medicare and they would stop paying for it. Ridiculous, I know.

 

[joni51]

Gotcha Cj. Well still trying to contact Emory! Uggg

 

[brooksea]

Joni, do you have their fax #? What's there to lose? You can do a search for an online fax that is free for one a day. It works for me. I'll PM you the number.

 

[Miss]

How much water or gatorade do you put throught the tube, CJ?

 

[brooksea]

Like I said, it's his call and I can't make him. It's about 32 oz a day. Then he will try to drink the gatorade, which probably amounts to 8 oz. So he probably gets 40 a day. I might get 4 cans of Jevity down him and a can of soup that I've pureed, maybe a milkshake. I no longer "make" a soup because I never know if he will "eat" it. So we go with canned (I puree - usually one can and less than half can water or milk) and he's fine with it. Makes it a lot easier, since I have a kid to cook for, too. Occasionally he will try to eat a chocolate and still tries to eat a grilled cheese sandwich that i cut in quarters and feed to him. He gets so tired chewing, he can only eat part of it.

 

[grandmommyk]

Over the many years that my husband has been fighting ALS, we have tried different things. At one point I took him to a naturalist to see if there was anything they could do. They hd us do stool samples that were sent to a lab in the Great Smokey Mountains or something like that. We got this long detailed report back. Surprisingly it didn't show any of the stuff they thought it would. It actually looked a pretty healthy person except there was no healthy bacteria at all. The naturalist thought this was the start of colon cancer. He wrote letters to Rick's doctors at the VA asking them to please do more test to address this. Long story shorter - my son took the test results to his professor at college to look over. The professor told him that his dad needed yogurt. At the time they didn't have the little yogurt drinks so I used a mixer to mix up a little bit of yogurt into his nutritional supplement each day and put it through his tube. I couldn't get a lot through cause it was too thick. I was so excited when Dan Active came out. I have been putting a bottle through his tube daily ever since. We have not found a single doctor or nutritionist who hasn't been surprised at this, but they have all thought it was a great idea.

 

[Miss]

Thanks CJ. I think my husband must be doing okay. He gets about 32 oz. of water, 3 cans of glucerna, 2 full helpings of pasta (or equivalent) and 2 snacks everyday. He'll usually drink about 4 oz. of tea, too. I'm going to try to put more water through the tube when giving his meds. That should bring his fluid level up.

 

[Atsugi]

WHOA. That's not right in any universe!

Even in the VA, 13 months is not acceptable to wait for a consult. If VA cannot arrange a consult within a medical reasonable period (say, 30-60 days) then your PCP should request authorization for a "non-VA" consult paid by Fee Basis funds.

Have you applied for "Service Connected" status? It sounds like your husband is 100% disabled, permanently and totally, homebound and in need of Aid and Attendance, eligible for vehicle and home modification grants and a slew of help from the VA's Independent Living Program. You and your kids should have college paid by the GI Bill, and life insurance, to boot.

Even without special status, the ALS/SCI coordinator at your VA should know you personally, and should expedite your every need.