Monday, December 19, 2011

Restoration (day 54)

I'm sitting with Nancy's brother and sister, Jim and Janet, tonight in her room. Today feels much better than yesterday, on all levels. She is doing better, I'm rested, and I have a solution that should allow her to talk.

The friends who have been sitting with Nancy at night all have feedback and suggestions for making it easier for her to sleep, ways to make her more comfortable. And the medical team has been really good at taking the feedback and turning it into standing orders that should make life easier. For example, instead of moving her every two to four hours (standard protocol to avoid bed sores and pneumonia) they are going to give her a good dose of pain meds at 9pm, reposition her a half-hour later when the pain meds are in effect, then let her sleep until she wakes. She's slept a lot today, and apparently rested pretty well last night too.

And it's a good thing, as her fever is back. She's currently running close to 102°. She's not agitated or trying to talk much, with a fever like that. Her nurse just brought ice packs, and gave her some tylenol, so it should come down some. We don't know if this is the abscess, a new infection, or some neurological effect. I remember a few months ago, when a temperature like this would really have me freaked out. Now, with all we've gone through, I'm just taking it in stride, and trust the medical team to handle it. There is a lot of competence in this ICU, and I never worry about the level of care she gets.

I feel rested after 10 hours of sleep last night, and I'm functioning a lot better too. I was able to get a bunch of bills and things handled this morning, stuff I just couldn't cope with last week. Today was also a good productive day at work.

Our community here is turning out to be amazingly friend with training as a speech pathologist suggested that we should look into electrolarynx technology. This is a hand-held sound device that you press against your throat, allowing someone who can move their lips and tongue to talk. I called the UCSF adult speech therapy department today, and they are arranging a consultation. But in the mean time, I've found some models on line, and am ordering one tonight with overnight shipping. With a little luck, Nancy will be able to talk on Wednesday. She will sound pretty robotic -- the sound these things make is not very human -- but I expect that the ability will be welcome. It's going to take some training and practice to make it work, but I'm sure several of us who are often with her will be happy to figure it out.

There are a number of new folks on this list, so I'm putting my older emails out into a blog, where you can read some of what has been happening up until now. Right now I only go back to late November, but in the next couple of days I will try to get the entire year out. You can see the blog at

Janet is spending the night with Nancy tonight, and I think we have a full calendar of folks sitting with her over the next two days. More have joined the caregiver list today; I think we're up to nearly 30. I really appreciate this support. It's time to head home for dinner.


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