[quote=gmcraft]I'm sorry things are not going well for the time being. If he really cannot swallow, or can swallow very little, it is okay to rely on the PEG feeding at least until the end of treatment and a couple of weeks after that.





If you husband shows signs of trismus, maybe you should start with the mouth-stretching exercises now rather than later. Of course, if he is really nauseous, you may want to find a time when he is feeling fine to do it.

It is very frustrating for a caregiver because you are trying to do the right thing but the patient is having difficulty doing it. I would suggest that while being vigilant, you ease up a little if he is really not doing well. The makeup feed can be given divided up among the remaining feeds rather than one whole feed.

In the midst of all this, please make sure you are sleeping and eating well. You use up a lot of energy doing the caregiveing and you don't want to end up getting sick yourself.

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oh Gloria... thank you for caring and for being a source of information and concern.
It is much appreciated.
Yes... we are relying more on the PEG feeding and we are diluting a bit. He was never a big eater but a grazer.. so that the PEG push feeding or bag feedings in any volume are causing him to feel full and burping.

and yes he has been doing mouth exercises.. sadly his trismus is quite severe so he tries ..but it is not that easy

but thank you for hitting some of the sense I feel of frustration.. yes.. vigilance and learning how to balance. My overwhelming concern is not letting him not get enough calories. but he is just NOT .. and I am getting so concerned and frustrated with the inability to help him get more in.

thank you for your support!!!