“Even when I walk through the darkest valley, I will not be afraid, for you are close beside me.” Psalms 23:4
This valley that we are walking through beside Aimee, though it is heavy with sadness and looming death, it is also a place of peaceful presence. Somehow peace can exist at the same moment as a torn heart.
Aimee’s TPN pump ran for the last time last night and today we switch to IV morphine. In fact, as I type, the pump is running its final minutes. There is a backorder of enteral liquid morphine and we have used all that the hospice pharmacy had on their shelves. The fentanyl patches have also been behind on order. The timing does work out as we were nearing the step of switching anyways. She had gone up on her morphine use to nearly 10x what she started with for pain and just yesterday we had to increase again. Plus, we have already been lowering her TPN volume this past week, because Aimee had started to swell uncomfortably as her body’s processes have slowed. It had gradually been reduced til she was only on 4 hours of volume instead of 18. Seeing her more comfortable with less fluids has been a relief. So between the discomfort of giving her fluids and the need for more pain medication this makes sense for Aimee.
Yet, turning off TPN fully is the most gut wrenching step we have taken thus far. I have fought so hard since the very day Aimee was born to feed her. Every day of her life it has been a struggle to get her enough nourishment. After giving up breastfeeding her, then feeding her by mouth at all, then feeding her stomach, feeding her intestinally, we now must give up feeding her at all by turning off the IV pump. My mother heart wants to nourish my girl and yet loving her is taking it away. This grief is heavy like thick mud pulling us down. Oh precious girl. How I long to gather you up in my arms and run with you from this journey.
But she must walk through this valley. And so will we, right beside her, as far as we can, until she reaches the pure, good light that will nourish her far more than we ever could.
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We love to read your comments and encouragements! Messages to Aimee are always welcome too. I will definitely read them to her. :)
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