Brand new g-tube for hubby with bulbar onset

[Momto2Kitties]

Hello, everyone! This is my first time posting. I am currently sitting in Recovery with my husband following his successful g-tube placement. He started with slurring speech this past Spring, progressed to swallowing difficulties, and was diagnosed with bulbar-onset ALS in December. So far, his limbs are relatively unaffected, just some weakness in his right hand (opening jars, etc.), and he can still drive and walk (although not too far, lest it tires him out).

While he can still eat many non-particulate foods and can drink as long as it’s lightly thickened, since his breathing (particularly exhalation) has diminished from 116% at his best to around 49%, he is having difficulty taking pills without choking or spitting them out, and he is having trouble eating enough calories, he decided to get a feeding tube now. Our hope is that he can avoid aspiration pneumonia, but still eat some foods for a while longer.

He has also been prescribed a BiPap and a Cough Assist, although we are still waiting for final approval and delivery.

With all that said, do you have any suggestions for keeping him comfortable while he is getting used to the g-tube, BiPap, and Cough Assist? Do you have any recommendations as to what type of nutrition he should use to supplement the food he is able to eat? I know we don’t want to use anything like Ensure, but are there any tube foods that do not require a prescription that he can use? Has anyone tried Real Food Blends, and if so, what do they think about it?

Thank you all in advance for any advice you can offer us.

 

[Nikki J]

Hope he is feeling better today.

Most of us here are not fans of ensure or the prescription formulas that are often started like jevity. You can blend real food if you are so inclined and then thin it to a consistency that works. You do have to be careful at first. You don’t want to clog the tube! Whole story meals, kate farms and liquid hope are other examples of more real food formula choices besides the one you mentioned

It is good you plan to supplement. Keep an eye on his weight to be sure he is getting enough.

 

[Momto2Kitties]

Thank you, Nikki. He is feeling a little better although we both slept in recliners last night because it hurt Dave’s surgical site for him to sleep on his side, and we are waiting on a bipap so that he can sleep on his back without having trouble breathing - he frequently holds his weakened exhalations which then wakes him up.

We actually got a virtual call today from a medical supply rep who talked us through flushing and using the tube for feedings and meds, and it looks like the doctor ordered Kate Farms and related supplies that are to deliver today. I understand from KF’s website that all but the nutritional shakes are good for tube feedings, and all of their formulas can also be taken orally if Dave should so desire.

Honestly, he has been our chef for the nearly 10 years that we’ve been married, and I don’t have any particular desire to blend regular food, although I will make meals for myself (or us) should he someday find that he can no longer do that or he doesn’t enjoy it anymore. (He has been making smoothies for himself for awhile now and still cooks for us several days each week.)

We will definitely be keeping a close eye on his weight, as I know that can be an issue going forward, so thanks for the reminder!