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Topic Weight loss and Feeding tube Go to previous topic Go to next topic Go to higher level

By dans316 On 2014.07.19 07:36
My wife June has lost about 15#, down to 85# over the last 3 or 4 months. She did have a swallow test and the result was Silent aspiration of liquids. She apparently had no problem with the solids. She just saw her Neurologist this past week and he recommended a feeding tube. June has said to me that she doesn't want a feeding tube, but she wants to live. Right now her weight seems to have "stabilized", she's holding at around 85#, so I'm reluctant to do the surgery with all it's pitfalls for PWP.

Her problem seems to be with chewing food and then swallowing it. She has no problem with milk shakes, ice cream or the like, but with solids, there seems to be a problem with transferring food after chewing it, to the throat for swallowing.

I've been considering getting her baby foods, although years ago when she had dentures at the age of 18, she was on baby food and did not like them except for the fruits.

Me Ke Aloha

By carman96 On 2014.07.19 09:45
So sorry Dan, for you and June.
You can grind up your own food. They have special baby food grinders that lots of mothers use because they don't trust what's in the jars. Also, the stuff in the jars is probably better now than it used go be.
Have you tried shakes or smoothies with the protein powder? They have some with higher calories for athletes and such. We used to make milkshakes with Ensure and bananas for my mother in law, who didn't have PD but sometimes couldn't eat.
Good luck to you Dan, I know you are taking good care of June.

By carman96 On 2014.07.19 09:51
Sorry, just read the other thread about ensure. But think of other high calorie foods you can put in it.

By jcoff012 On 2014.07.19 17:45
Dan, this is a major decision for you...would a second opinion be appropriate? My BIL had a feeding tube, but I did not help with the SIL did that part of his care. It was eight years ago, but I remember it was a huge commitment of time and care, for which I am sure you are ready. The one thing I remember most was that the point of insertion required daily care to avoid infection and soreness. As with everything medical, that was years ago and perhaps now this has been simplified...

My love to you and June as you go forward. It seems every decision with PD is a major one and June is blessed to have you. Much love, many hugs, and keep us informed...We all care, you know that. Jane

Perhaps if you call patient care at the hospital, they will advise you on solutions? Just a thought.

By Mary556 On 2014.07.20 06:42
Aloha, Dan.
A while back my Mom had difficulty swallowing. We figured out that she was too weak to chew certain foods thoroughly and then would choke as she tried to swallow. Her weight is not as low as your wife's and her diet is not as restricted.

In case it might help, this is the food mill we use:
It shreds a small portion of cooked meat (ham, chicken) to a "chewed" consistency. Then we mix it into mashed potatoes or add enough gravy to moisten well.

I think the same mini-processor could puree a small amount of cooked vegetables /fruits as Carman suggested. Or you could puree a larger amount in your regular-size appliance and freeze individual portions.
For ready-made baby food, I like Earth's Best pumpkin-spinach. the carrot-broccoli flavor is also good but a little sweet for my taste. put 1/2 pouch into a custard cup and microwave about 15 seconds.

For protein, would egg whites be good? (picturing Cool Hand Luke)
I think you would not want to use raw eggs, but maybe you could blend some liquid whites into her milkshake or fruit smoothies? I'm not familiar but have read that "EggBeaters" might have a chemical aftertaste. I use a pure egg white powder.
Mixing by hand it has lumps, but a hand mixer or blender would dissolve them.

God bless your June and yourself..

By dans316 On 2014.07.21 11:44
Thanks everyone for the suggestions. I sort of remember when I was a kid, they used to put an egg in a milk shake. I guess now that would be considered a no-no. Anyway,today I thought I would try cereal and was surprised that June just ate all of a small dish of Raisin Bran with banana slices. That went down pretty good, although she had some trouble with the raisins. Then to top it off she ate several pieces of a cinnamon bun. I can see that I have to get more creative rather than just running to Mc D's although yesterday I got her pancakes and eggs and she ate about 1/2 pancake and maybe 1 egg. Also I've been trying to spread her eating out over the day, 4-5 small things rather than the traditional 3 meals. I'm trying to avoid a feeding tube with all the risks of surgery for PWP.

When I bought an Oster Blender for making milk shakes, it also has a food chopper, so I'll have to give some of these suggestions a try.

Me Ke Aloha

By Mary556 On 2014.07.21 18:46
Aloha, Dad. That is great news!
Does June like macaroni and cheese? maybe it is soft enough. you could try a frozen version to pop in the microwave. (I think Stouffer's is good.)

An internet search of "oral surgery soft food diet" gives a few more ideas... eggnog, well-cooked brown rice (maybe you could mix soft rice with custard or vanilla pudding), tofu, soft scrambled eggs, ricotta or cottage cheese, cream cheese, oatmeal, cream of wheat....

my PWP enjoys DiGiorno pizza with the crust cut off. She is able to eat English muffin if it is toasted on the very lowest setting. she likes whole grain waffles (frozen Eggo or similar ready-made), would eat them every day if we let her. One of my Mom's favorite lunches is a "cheese dream" sandwich... very lightly toasted bread with a slice of swiss cheese (put cheese on one toast and melt ~10 seconds in microwave) and an over-easy egg in the middle (break yolk and flip over for a moment so it is not too runny).

Hoping for the best for June. Peace be with you.

By carman96 On 2014.07.22 01:31
Dan, good luck. I hope you can get enough nourishment in her that she doesn't need the feeding tube.
You are a good man and so dedicated to your wife.

By Mary556 On 2014.09.12 21:33
Dan, here is one more... maybe your June would like this, too:
Light toast spread with peanut butter, folded in half and dunked in a cup of hot chocolate until it is slightly soggy.
My Mom requested some for breakfast today. She used to make this for us when we were small.

God bless all PWP's and caregivers.

By LOHENGR1N On 2014.09.13 01:54
One thing that hasn't been mentioned here is the patients wish to not have a feeding tube. I'm glad other options are being tried before it becomes time for that big decision. I know that we patients hope our wishes will be honored.

I know this is a hard trial to face and the tendacy is the keep a life as long as possible. One of my sisters was diagnosed with cancer last month it is aggressive and has now hit her spine. She is opting for chemo and radiation however she has lost the ability to walk and bowel and bladder control. Her children want her to undergo spinal operation which cannot be done right now. Her cancer is supposed to respond to treatment first time around but usually returns within two years and does not respond to treatment then. Whatever they decide her quality of life for that span doesn't look good. Sometimes the hard choices might not be the right one's, I don't know I'm rambling now but I just thought I'd bring up the patients wishes should come first.

By moonswife On 2014.09.13 08:08
Dan, Try every thing you can to avoid the feeding tube. A new, easy breakfast recipe. Cooked white or brown rice, mixed with vanilla ensure, tiny bit of cinnamon. Used as a cereal. One of my husbands favorites. His mother routinely cooked triple batch of rice at night for dinner, and "breakfast" rice was enjoyed by 3 hungry little boys the next morning. She used Pet Milk on theirs, but Ensure gives extra protein.

By dans316 On 2014.09.13 11:36
Once again thanks everyone for the suggestions. We did meet with a nutritionist last week. Her suggestions were mostly to enhance the foods she does eat with fats and protein by adding extra butter on pancakes along with extra syrup or peanut butter on waffles. Adding protein powder to milk shakes and 3 scoops of ice cream at bed time.

One of the problems I've noticed is it does take a long time for June to eat. Somewhere I read that one trick for weight loss is to eat slowly, it makes one think they are fuller than they really are, that never worked for me, but then maybe it does work for others. Also even though I try to give her small meals/snacks throughout the day, she complains of being constantly full. One other possible problem is because of the weight loss, it's certainly possible that her dentures no longer fit properly so we will have to see a dentist for that.


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