End Stage Questions/Guidelines

[jlsntx]

My husband was diagnosed with Bulbar type ALS in December 2008. He opted to get a PEG tube and suprepubic cath...no vent. Since Labor Day we have been hospitalized 5 times with pneumonia. Three weeks ago, he became unresponsive and our hospice team told me that he had entered the last phase. I had his feedings discontinued, and amazingly enough, two days later...he just came back to us.

My question now, though, is that he doesn't seem to be tolerating his PEG feedings. We had changed to Jevity 1 about a month ago. I checked for residual last night and got out 90cc's of neon green bile. This morning there was another 170cc's. I have his tube open and letting gravity have its way. He seems to be finally resting much easier.

Is this a sign that his body is rejecting the feedings and trying to shut down? I know without a chart and some hx this is a big call. I guess I'm really looking for some guidelines and insight about what may or may not happen.

Any information that you all can share is very much appreciated.

Sincerely,
Jolynd Hulsey

[joelc]

Sorry for your problems, unfortunately there is no way to tell what might happen or how soon. I had the same response to formula so we purchased a Vita-Mix blender and use whatever my wife made for meals. That solved all my feeding woes.

[trfogey]

Have you considered going back to the formula that you were feeding him before you started using Jevity? Maybe there is something in Jevity that isn't in the previous formula that is causing him problems.