on bipap 24 hours

[rms000]

My mother has bulbar ALS and now she is on the bipap 24 hours and is not tolerating the feeding tube well. Recently the doctor had her on TPN to help her with calories because she was losing weight. She does not want to get a tracheostomy. What now? I don't want her to suffer. I feel very helpless.

 

[vickim]

I would support her decision and keep loving her like you have been. You could talk to her doctor and see if there is something else that can be done. I wish you peace.

 

[Barbie]

Hi--I agree you have to support her decision on the trache. I do not know what TPN is, but have you tried benecalorie? I do not know if you could add that to the formula for peg tube. it is 350 cals in one ounce and mixes in with anything. PM Rose and read her blogs--she is an expert on peg tubes and has lots of really good info on her blogs.

Other than that--you shoulc talk to the doc about Hospice--you do not what suffering and that is what hospice is all about. they can make and keep her comfortable. air hunger can be very scarey and create stress for everyone. I understand that some times they will give very small doses of morphine to relax the pals so they do not feel it.

good luck to you and your mom--

 

[momap53]

So sorry about your Mom. There are lots of formulas out there, if she doesn't tolerate one, try something else.
Honor her wishes about a trache. Hospice may be able to provide some support for your Mom and your family.Give them a call and ask for an assessment.

 

[rms000]

Thank you.