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[The CO crew of Deana, Jay, and Liz sent this update last night and I received more updates via text and phone call from the road today. They are headed home for now. Liz Smith doing the talking here, minor additions from me in [square brackets].]


Deana & Jay & I have cornered a couple of nurses to ask for info and status, but haven’t been able to talk to any doctors. The nurses we’ve talked to seem to feel like it’s still a terminal situation, even though he appears to be doing better and is “as good as can be expected”, and it’s just matter of how much time is left. Brett’s talk is still very positive, references to when he leaves, he tells anyone who asks that he’s feeling great, and he told a palliative care nurse counselor person who stopped by this morning that “dying is completely out of the question now,” and “my friends are here now. That’s pretty much all I needed.” However, Deana said that her impression from talking to him is that he does still realize the seriousness of the situation, and that not recovering is a possibility. So he doesn’t appear to be totally delusional, and is still in touch with the reality of the situation, which I think is good.

You’ve all heard him go on and on about how much he loathed being intubated. When asked today what should happen if he hit a point where he needed it again, whether a tube should be inserted, he said yes. So that’s a big sign that, at least mentally, he’s determined to get through this.

Good news on his observable physical condition: he’s been given the ok to eat whatever he wants, and today’s menu included spaghetti & meatball, fruit, cheese-its, tom kha & rice, in addition to the several Italian ices and copious fruit juices of yesterday. He was put in the chair again today, and instructed to stay there for at least two hours if he wants to leave the ICU and be moved to another facility. The edema continues to go down in his arms, although last I saw, his feet were still looking pretty bad.

He did seem a little more tired and spacey at some points today, but I think this might have been due in part to not sleeping much last night. (He told us that he had a nice time chatting with the night nurses.) By the end of the day, even though he was almost falling asleep in the bed, he was lifting his own drink from the table. We’re still feeding him food and drink most of the time, but the fact that he’s able to lift a cup is impressive. And he’s still talking tons, joking, teasing, flirting with the nurses, etc etc. When the doctors and nurses visit him, he talks to them pretty directly.

Dialysis was started tonight – we’ll see if there’s an effect in the morning. (It’s a slow, 8 hour dialysis, because his blood pressure is low.) On a possibly disturbing and at the same time comic note, he pulled out most of his feeding tube this afternoon while doing his obsessive nose cleaning thing. Deana & I tried to stop him, but I think he took advantage of the fact that we weren’t totally firm about it, and got enough of it out that I believe it’s now permanently staying that way. He’s being encouraged to eat a lot, which he seems to be doing. There was talk of moving his central line to his arm, but they’re waiting another day or two in the hopes that the reduced edema will allow more access to veins.


I wasn’t there for this, but Deana said that this morning the two Indian doctors dropped by and told him that he’s advancing and can eat whatever he wants, that they want him to get more vertical and to have people move his arms & legs, and offer resistance. We’ve been doing some of this, and when Deana first started, he pushed so hard against her that she got concerned about fatigue and told him to stop! They seem to be open and perhaps even somewhat positive toward the idea of him being moved to another facility (I think there was even talk of a rehab facility of some sort?), and Brett’s mom is looking into info on nearby locations that have dialysis available.

Today Deana, Jay and I were here, and his high school friend Kelly arrived with his parents, who visited a couple of times but stayed somewhat out of the way to give us all time to visit. Kelly is probably leaving early tomorrow [Saturday] morning, and D&J & I are planning on leaving mid-morning. There’s been talk of Lori (or Laurie?) visiting sometime soon, Liz Jensen (possibly Sunday), and I’m not sure when Hannah will be returning. [His pal DJ from Seattle may visit also, and I am still trying to figure out when I can get back out there - PL].

I guess the short story is still very much the same as when you left: obvious physical improvement, obviously positive attitude and state of mind; but we’re very unsure what this means beyond him being happier and more comfortable. But we’re not complaining, and not giving up hope yet either.

[From the texts and phone call today, it seems like there is still good news and bad news. On the good news front Brett is eating all kinds of food, eggs, toast, cheerios, milk, you name it. AND he was scheduled to move out of the ICU this afternoon but I don't have confirmation of that yet; they were looking for a bed to move him to. They have been lowering his oxygen and antibiotics as he does seem to be improving in those areas. On the downside, it sounds like he was having more trouble with words today; possibly a side effect of the dialysis? The nurses claimed it was related to the damage in his liver, I am not clear on the mechanism there. Thanks again to Liz, Deana, and Jay for driving out and for sending this update. More news as I have it.]

[Last Ed. note: The subtitle of this entry is the name of the Higher Intelligence Agency track on _Excursions in Ambience_ volume 1, another longstanding favorite compilation from the early days of Ambient House]

Date: 2011-07-31 01:08 am (UTC)
From: [identity profile] catbear.livejournal.com
Is there an address to which things can be sent such that they'll get to him even if he changes facilities? (If this needs to remain private you can just email me at seanmpuckett@gmail.com) -- thanks!

Date: 2011-07-31 08:23 am (UTC)
ext_181967: (Default)
From: [identity profile] waider.livejournal.com
Seconded. Waider@Waider.ie

Date: 2011-07-31 02:09 am (UTC)
From: [identity profile] paniolo99.livejournal.com
The neurological changes could be due to elevated ammonia levels, a side effect of liver damage. Dialysis can help this, as can a drug called lactulose.

Thanks for the updates. Please tell Brett he is loved.

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