I left this month's appointment giving in to the fact that a central line is here to stay, her body will always need some sort of IV nutrition or fluids, and she will never be able to maintain her nutrition or comfort via her j tube. Deep down I have always known this was her fate. But this month it makes me angry, it makes devastated, and it makes me wonder what would have happened if we never put this option on the table to begin with? I feel stuck, torn between which perspective of quality of life we are honoring. The one where she is comfortable so she can actually enjoy life and wondering if being attached to tubes and having central line access allows her to actually enjoy the life that has now become comfortable.
Depending on either perspective we have new decisions to make with new choices.
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