This week we had Sonzee's monthly TPN/Lipids appointment. I prepared myself for the possibility of not so desirable information being shared just so I wouldn't be caught off guard this month, but sitting there I realized that the fact that she is receiving an intervention such as this, requiring monthly appointments means that any optimistic mental preparation is nearly impossible. I am bound to be caught off guard over something. Listening to her doctor talk about things we have heard thousands of times and have even said ourselves, sometimes seem to be heard as if they are being shouted via a megaphone for the first time. I feel like they are the answers to the choices, but since I wasn't ready to accept them I didn't really hear them previously.
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.