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Joined: 2/4/2010
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Location: United States
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Hello All,
My husband Mark was dx'd with ALS, Bulbar type, in December of 2009. We have a PEG tube and suprapubic catheter, and opted not to have a vent. Three weeks ago he had become completely non-responsive and his systems started to shut down. He had stated that he did not want to pass away here at home, so our hospice had him admitted to a hospital as an in-house patient. Our doctor told me that he was no longer getting benefit from the feedings, or the IV for fluids, so I had them taken away. Well...two days later he just came out of it!
My question now is that he is no longer tolerating his feedings. As a matter of fact, when I checked for residual last night, I pulled out about 90cc's of neon green bile. This morning, there was another 170cc's. Is this a sign that the body is now rejecting the feedings? I know without a medical chart, or patient hx, it's a big call. I guess I'm looking for some end stage guidelines?????? He is resting better today with the tube open and draining.
Our hospice team is AWESOME, but he is one of only a few ALS patients they have had experience with. I just don't want to keep forcing the feedings if it is causing him so much discomfort. I believe this is his body's way of getting rid of the feedings, but without medical training....it's just strictly an opinion, and one that our hospice team doesn't really share.
I would certainly appreciate any input you all with real life ALS experience can provide.
Thank you so much,
Jolynda Hulsey
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Rank: Newbie
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Joined: 2/4/2010
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Location: United States
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Oh gosh....we were dx'd in December of 2008!!! Sorry!
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Rank: Advanced Member
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Joined: 6/14/2009
Posts: 782
Location: United States
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Mary Beth, jump in here..None of us can answer this. I can only add I've had bulbar umn domanent ALS for 7 years..
God be with you dear..Ron
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Rank: Advanced Member
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Joined: 1/4/2008
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Location: USA
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Joylnda, Sorry I have not replied sooner...had a death in my family. EOL is a hard call to make for the patient with ALS, since system shut down can occur and then resume suddenly. I can understand you wanting to stay with your hospice team, but since Mark is more conscious - is he comfortable or is he now hungry ? You did not explain what his breathing status is or if he is able to communicate. I would welcome an opportunity to talk with you on the phone and you could explain further. Protocols for hospice care vary. I will be happy to explain and make some suggestions you could discuss with his hospice team. You are honoring Mark's wishes. I know how difficult that is for you. I look forward to your call this weekend. Mary Beth Geise, RN
Resource Nurse Consultant
336-340-6400
mbgeise@als.net
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Rank: Advanced Member
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Joined: 6/14/2009
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MB..sorry to hear of your loss. Hope it wasn't ALS..Ron
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Rank: Advanced Member
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Joined: 6/14/2009
Posts: 782
Location: United States
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Update on Mark, please ? Ron
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