Dobhoff NG tube and Real Food Blends?

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JackieZ

New member
Joined
Jun 29, 2021
Messages
4
Reason
PALS
Diagnosis
05/2018
Country
US
State
MI
City
Brighton
my CT scan ruled out peg as a viable option so they placed a dobhoff ng tube. The hospital provided Nutren was intolerable. I ordered katefarms and liquid hope to try instead.

Has anybody tried Real Food Blends feedings SPECIFICALLY in a dobhoff? I assume there's probably broth dilution that has to happen. Their website recommended tubes 14 french or larger. Mine is definitely smaller than 14.

any other food tips appreciated!
 
I would presume it would require significant dilution as well. A 4mm tube will be pretty limiting.
Not knowing what the GI issue is, was a RIG considered?
 
Dobhoff was the last resort. Took four grueling tries to get it down (and a lot of tears since I'd been six days NPO, failure would have meant weeks or less to live). I do not want a trach and surgery would have likely ended with that. PEG could not be placed as my organs did not provide a space to sneak through. My ICU stay was already eventful enough, and a bowel perforation didn't sound like a fun risk. My neurologist said this would have likely been the case even if I had pursued the tube earlier.

We're experimenting with soups and things, adding calories and thinning with bone broth, coconut cream. The hospital provided stuff was embarrassingly awful GMO garbage with inflammatory oils and gassy fillers. Left me disappointed that a dietician would recommend that to someone who is already suffering from GI motility issues from ALS.

Katefarms Peptide1.5 is pretty good so far. A 1:1 dilution with water helps it flow nicely while getting in the water I need.

I think the consistent theme since diagnosis is "making the best of a bad situation". Today I added a cooled-down cafe americano with cream (for calories) to the bag. Probably the most "normal" I've felt in two weeks.
 
Nice! Coffee makes everything better...at least for some of us.
Glad the diluted Kate Farms is working out, too. From the calorie perspective, you might be able to experiment with nut milks, juices, etc. for extra hydration.
 
Hi Jackie. We used Real Food with my mom and it was definitely thicker than others we had tried (probably even the thickest). I would dilute it with a bit of warm water sometimes, and I would also occasionally microwave it to thin it a bit more. We also tried the Kate Farms and the RF was much thicker. But, in terms of experience, my mom did think RF was a huge improvement over others that we tried -- it made her feel less yucky and she said that it even tasted like actual food in her throat. We actually have a box of unused Real Food that I'd be happy to send you if you want to give it a try. I can send photos if you're interested. Let me know!
 
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