Today represents a shift, something of a change in direction in Nancy's journey. I can feel it in my bones, even though she has not made any decisions. The texture of our existence is a bit different.
Our meeting this morning helped me understand a few things, and I feel as though part of my load has been lifted. Her doctors made it clear that Nancy doesn't have to choose A or B, like I thought (it's funny how my fears creep in). Outcomes are unknown, it's much easier to just be present. Really, the choice she has is to simply stop any additional medication or procedures. It's easiest to say 'no' to something new, rather than take away some form of support she already has. That decision can come at any time, there is no rush. The respirator support that she has been receiving is not available in the palliative care suites, so we are not going to be moving. Palliative care docs and nurses and a truly lovely buddhist advisor are going to come to her room to help.
The palliative care team all seem to be impressive, compassionate people with a lot of capacity. Part of why I feel lighter is that I can rest into their support along with Nancy. We have another meeting tomorrow morning with them (and the lip readers), to discuss who Nancy is, how we can all support her, and what her desires are. I can feel how we are on a much better track now, rather than trying to make medical decisions with our own resources.
Today Nancy has needed more breathing assistance, and seems to have less sensation in her arms and legs. Her neck is very tender, she's still running a mild fever, and doing well in all other aspects. Even though her kidneys are working great, she needs dialysis every three or four days, and that happened this morning before and during the meeting. We had scheduled a follow-up MRI a few days ago to track the state of her abscess, but on Sunday, Nancy refused to go, and on Monday, her ICU attending doc told us that he wouldn't have ordered it, and it doesn't really help in any way, so Nancy had them drop it. The damage to her spine and nerves is irreversible, barring miracles. Nancy is a quadriplegic, and she will be motionless, with respirator support, for the rest of her days. And...she is completely lucid, making good decisions, feeling sad, frightened, and occasionally smiling.
She decided that she wanted orange juice this morning, so I went and got some, and we gave it in small quantities using a mouth-cleaning sponge on the end of a stick. That got a smile and a wrinkled expression. A small, endearing thing...that's the strongest taste by far that she's experienced in many weeks.
Her niece Kristen stayed with her last night and all morning. I am talking to folks about how to set up a system for people to come and stay with Nancy 24x7, as she really wants company in her room. We don't have the details worked out yet, but the palliative care folks seem helpful and full of practical ideas.
I'll be looking for volunteers to come sit with her for a minimum of four hours at a time, plus someone to stay here each night from 8 or 9pm to about 6am. If you are interested in helping with this, please send me a separate email, as I will create a separate list and calendar (and get help!) to organize it. I'm still planning to be here each day, in the evening, to be with her and to support the 7pm prayer circle. And I'm going to ease my way back into work, as I cannot keep dong 12-hour days in the ICU.
Please continue to pray for Nancy to find peace and clarity and wisdom.
Love,
-tdc
-tdc
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