Feeding Tube Help

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Lisa I.
Lisa I. Member Posts: 16
in Head and Neck Cancer #1

My husband was diagnosed a year plus ago with SCC P16+. After undergoing a full tonsilectomy & 38 biopsies down his throat and neck, they never found the sight of origin. He went thru 35 radiation and 5 chemo Treatments, finishing in Oct last year. the tumor didn’t shrink as much as they had hoped, so underwent radical neck dissection this past Feb. They found minuscule cancer cells at base of skull and around the carotid artery...inoperable and he can’t have any more radiation because of undergoing larynx cancer 11 years ago with radiation as well. He is now, thankfully having Immunotherapy - Opdivo.

He had been eating soft foods after surgeries but slowly lost this ability, getting easily choked, even with water. He underwent a swallowing study and they determined there was no blockage (thank goodness!) but found the epiglottis is not closing off the windpipe as it should. He has been put on clear, clean water sips and ice chips only by mouth. 

He had had a PEG tube inserted prior to beginning treatment. It saved him during treatment and we get regular shipments of nutrient cartons and we supplement with extra water and have added Boost Plus, Instant Breakfast packets with milk, etc. all thru a Kangaroo Bag that hangs on a feeding pole. However, he is getting tired of this routine and the ‘burps’ they cause. Also the milk accentuates the thick saliva, which is AWFUL. So, we cut the milk down to only once every couple days. I have blended soups and such and we use a large syringe to push it thru his tube. He can dip a spoon and, thankfully, taste what we are putting in. When we switched to other regular food, his tube got blocked! Scary...but after a call to the Nurse hotline, used a can of Coke to “pump” the syringe back and forth and the blockage cleared. 

I just bought a Ninja blender/processor As I do t think my other blender liquefied as much as needed. my question... does anyone have some recipe ideas that I can use?!? thanks in advance! 

Comments

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #2
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    Hi Lisa, sounds like you are

    Hi Lisa, sounds like you are doing a great job with your difficult situation.

     I had the same tube with the kangaroo pump (for 10 months) I could not tolerate a fast pump, so had to find things with a high calorie count without adding volume.  Soylent ( no longer available in Canada) is an excellent product for the tube and by mouth when that is possible. I found it has a balanced nutritional value and calories. To use it as a base will add calories and it tastes ok. 

    When blending meals adding Hemp Hearts, Chia seeds and flax seeds is another good  (healthy)way to add calories without volume. 

    There is a website smoothierecipes.com that has a good variety ( not high calorie) and a weekly shopping list that I found very helpful to make sure I had enough supplies on hand. To modify the recipes for a higher calories was easy by adding nut butters. 

    Frozen Avacado is now available in my local grocery stores, and is a huge plus for a simple way of adding calories to any blend.

    I have a lot of food allergies so had to get very creative.  If you need more hints or tips let me know.

     

     

    Take care

    D

  • Darkdancer333
    Darkdancer333 Member Posts: 115 Member
    #3
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    Boost is what kept my wieght

    Boost is what kept my wieght up. 

  • amr2662
    amr2662 Member Posts: 45 Member
    #4
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    Oley Foundation

    Hi Lisa,

    I have been on a feeding tube for 7 years now because of late effects of my radiation.  You should check out the Oley Foundation's website.  It is a non profit organization for patients and providers of home IV nutrition and feeding tube nutrition.    They also have a online support forum for questions.  I have learned quite a bit from others through the years.  In addition to the commercial tube feeding formulas I use, I also puree (in my Vitamix blender) fruits and veggies.  I typically just use water to thin them out.  You might want to try running your blends through a mesh strainer to remove any lumps before using to prevent tube clogs.   I still use commercial formulas for the majority of my feedings because I am working full time and it is just more convenient, but I like adding the healthier fruits and veggies.  

    Best of luck.

     

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