Tuesday, September 16, 2008

Owen was awake for a little bit again today. He said something that sounded like "whatever!" when he was awake, which is quite possible, as that used to be a common phrase of his.

He didn't eat or drink anything, but as he reaches the end, his body requires much less. In fact, having more hydration than his body requires would actually make his heart have to work harder, and would increase the intercranial pressure in his brain...He is on the maximum dose of steroids to reduce the swelling in his brain, but as the tumors continue to grow, there is only so much that can be done. I have to wonder if he has a constant bad headache, and yesterday while I was rubbing his head and neck, I noticed that he flinched every time I touched the back of his neck. I wonder if even the slight touch that I was using on him caused him acute pain. From the start of radiation, he has complained that his back hurts, and has continued to do so. I wonder if that still hurts him, or even more so now that he has more tumors in his spine and as they grow, they put more and more pressure on different nerves. I know his feet hurt, because when I try to do any range of motion on him, he flinches and says "ow". Even though he is on continuous morphine and we give him a bolus push before we move him, I wonder how much pain he is truly feeling all of the time. I know firsthand that you can become accustomed to and adjust to amazingly difficult circumstances, and can live with extraordinary amounts of pain (mine emotional-Owen's physical, and probably emotional, as well.) So it makes me wonder if he is feeling pain, but not expressing it because he has become accustomed to it, and, at this point, is having difficulty expressing what he is feeling at all. There is no way to know for sure what he is feeling. I'd like to think that when he is asleep he is resting comfortably and is not in any pain, and that all of his dreams are beautiful and amazing, but how do we know? How much of what we believe is to comfort ourselves, because knowing the truth is far too painful...

1 comment:

Anonymous said...

I am a complete stranger and you are my hero. I read and weep through your blog daily as I am connected through a distant relative currently at St. Jude. Your writing about your life has inspired me to make some changes in my life-to better myself as a mother to my 3 little ones who are extremely active, difficult and overwhelming right now. It has been so easy to get caught up in unimportant, consuming commitments and tasks that I have failed to savor and appreciate them as well as my time with them. I admire you, Owen and your family and thank you for sharing Owen's life with me. I wish I could ease some of your pain. I share it with you and will always have you in my thoughts and prayers.