Old 11-12-2017, 06:57 PM #1 (permalink)
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Default Eating Food with Vent/Trach

My boyfriend is newly on vent/trach. At the hospital we were told by an MD that he will not be allowed to eat or drink again (he has a feeding tube).

At the L-Tach rehab the speech therapist gave him mashed potatoes and he aspirated them and then got pneumonia.

He eventually went to another rehab facility and another speech therapist said he passed the swallow test and gave him food and drink. This started on a Monday. Thursday morning he had 2 mucus plugs a few hours apart which resulted in major panic attack and an abnormal EKG and he was transferred to the ER. He was admitted and once again has pneumonia.

ER Doctor said food had nothing to do with this incident. I am not convinced.

Thoughts???
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Old 11-13-2017, 01:34 AM #2 (permalink)
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Default Re: Eating Food with Vent/Trach

Some people eat with a trach.
Most don't have ALS, nor a feeding tube.

Based only on what you have said, I would not allow anyone to feed him by mouth at this point -- just use the tube, that's what it's there for. I would also try to transfer him home as soon as he is stable, assuming you have been trained by someone competent on caring for the trach (cleaning, changing, suctioning, vent settings) and feeding tube. Or is that not the plan? The more you can tell us, the more we can help.

Your local ALS Association chapter is one resource that could facilitate your training/his transfer, along with the ALS clinics in either New Brunswick or Newark. Is one of those clinics coordinating his care?

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Old 11-13-2017, 07:29 AM #3 (permalink)
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Default Re: Eating Food with Vent/Trach

Thank you.

The plan is for him to come home eventually but lots of details to work out with Medicaid before he can. For now and probably next few months, he will be at this rehab.

I guess the main problem here is that HE wants to occasionally eat by mouth (in addition to getting his main calories from feeding tube) and the speech therapist at the rehab is saying its ok. I am not as convinced as he is and wondering if anyone else has had experience with eating.
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Old 11-13-2017, 09:49 AM #4 (permalink)
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Default Re: Eating Food with Vent/Trach

Asking for others' experiences won't answer your question, Linda. Different muscles weaken at different rates in ALS. 2 pneumonia cases after oral intake says pretty clearly, why take the risk? Swallowing tests aren't going to show every aspect of how/why he could be aspirating under non-test conditions.

Mashed potatoes and other foods he likes could be the basis for "real food" blend tube feeding, which many of us recommend vs. commercial formulas.
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Old 11-13-2017, 10:56 AM #5 (permalink)
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Default Re: Eating Food with Vent/Trach

My husband and PALS ate and drank for 3 years while on a trach and vent until his tongue and swallow became too weak. As Laurie said everyone is different in their progression with ALS so it's not so much about whether people can eat with a trach and vent ( they can) but whether ALS has weakened their ability to do so.
Even though my PALS passed all the swallow tests, he had pneumonia numerous times in the first 9 months or so ( 3 months in the hospital and rehab). I finally learned that we did not have the right respiritory protocol in place( hospitals and rehab included) and this was the cause. The key was keeping the secretions thin enough and moving out of his lungs. What worked in my husband's case was : 2 plus liters a day of fluids, humidifiers on his vents 24/7, and cough assist multiple times a day. He only had 1 case of a lung infection which was treated at home after this.
I would first try to determine the cause of his bouts of pneumonia and proceed from there. There is also the possibility of hospital/rehab acquired pneumonia if they are not keeping to sterile protocols.
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Old 11-13-2017, 12:12 PM #6 (permalink)
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Default Re: Eating Food with Vent/Trach

It's true that trach care can have a large bearing on this. That is why I asked about the care setting. If it were at home where you can control more of the variables Kate mentioned, there might be less risk involved in trying to continue oral hydration and/or feeding. At a facility, I would not trust that any particular protocols are followed-- thus my recommendation to not undertake that risk.
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