dwenius

[Now that LJ seems to be up again. Jesus, Russia, can you put your bullshit politics aside for a minute? I got IMPORTANT SHIT to do and I need LJ up even if it requires that you stop suppressing dissent for a few hours. So cool it with the DDOS.]

I posted some short notes yesterday with the high points, but I wanted to share more details:

I arrived a little after 9 and it was just Brett and I for the first hour. In the morning, Brett was still intubated but seemed much stronger. He was alert and able to control his fine motor skills well enough to write on the whiteboard if I held it just so. The first thing he wrote was "LOVE". Pretty much summed up the day.

He wrote, "I'm not going anywhere." He is very full of fight and wants everyone to know he still plans to get better, "when not if", etc.

I read all of the new notes and comments that you folks have sent to him, and showed him the pix posted to his FB wall. Then he wrote that he liked to be read to, so I pulled out _Mr. Palomar_ again.

When is the last time you read that book yourself? If at all? I strongly encourage you to pick it up and roll through a few chapters. Maybe I am in a hightened state of awareness (likely) but I can't recall the last time anything resonated so deeply. It is not an accident that Brett adopted Palomar as his nom de plume. Each little story shimmers with allusions, metaphors, brings up stories from our shared past, or reminds me of my current life ("The song of the blackbird"), or offers reflections on his condition ("The sword of the sun").

He wrote that reading/listening to Calvino makes him feel alive. So I kept reading until he wrote that he was tired.

Deana, Jay, and Liz (Smith) arrived and we did some round robin cycling of people in the room with him. His morning breathing test went very well and the staff suggested that his breathing tube could come out; this got an enthusiastic nod and thumbs up.

Hannah brought more pix to hang on the wall in his field of vision, so did D+J. So now Brett can look at his girlfriend holding an orangutan, a prairie chicken of a particularly pretty type whose actual name I have forgotten, pix of D+J, and the pic of Nina, Calvin and Rose ringed by get well cards.

Brett has many itches that need scratching. Hannah and I took turns donning gloves and helping him with that. The resultling eye-rolling moans of satisfaction were their own reward.

I stepped out for a short time to make a call, get coffee, and let the Colorado crew have some time with Brett, and when I got back to the room, the breathing tube was out and to all of our surprise, Brett could talk! We had been taking some calls from folks throughout the day, and the first ones were one-directional. I am sure that Gwen, Liz J., Karen, and a couple other folks were surprised to hear him talking back :)

It's difficult to understate the change in Brett's demeanor, energy level, and attitude over the past 36 hours. Love is a powerful, powerful force. Also: thank you all again for your good wishes. Brett knows. I think he was surprised by some of your thoughts, having thought some relationships to be scarred beyond repair. In this, as in his initial request to keep the knowledge to a small group, Brett is somewhat foolish. No grudge is worth holding. Anger helps no one. It's all water under the bridge. Thanks you guys for coming to his aid and sending all your love into the room. It's having a profound effect.

The next major event of the day was another winner: we got him approval for a liquid diet. Mostly he wanted some unsweetened hot tea. But once he got a taste of the strawberry Italian Ice, oooh, baby. He still has a feeding line, but for the past 5 days or so he hadn't had anything in his mouth but some ice cubes. Actual flavors are a small but potent pleasure. So the Italian Ice, fruit juice, and broth he can have now is all aces.

In typical form, Brett keeps asking us to bring him taboo foods (curiously, all starting with P. Pepsi, Peppermint Patty Pieces (triple score!), etc.) Hannah is our enforcer here, making sure we all know the threat to our kneecaps if we should indulge these requests.

His relationship with Hannah is amazing. Imagine someone who smacktalks and needles Brett as much as he does to others. It's like they are a retired and still married vaudeville romantic comedy act. He is very much in love with her and she has been so caring and attentive to him. See: "the true measure of love is scratching your partner's butt."

His mind is all there. His body is giving him some issues. His skin is pretty roughed up, particularly where there is adhesive on the various IV ports. The pain in his abdomen comes in waves and seems acute but he was able to breath through it most of the day. Turning him from side to side, as the nurses must do every few hours to protect his bedsores from worsening, seems much worse. He asks for and receives a double dose of pain meds with every rollover now. This led to a classic Brett-ism: "I've finally figured out how to get the good drugs at this party."

Today, pain meds did not cause him to nod out. Yesterday, the combo of the tube sedation and the meds made him very dopey in waves. So having the ventilator out is good is several ways. We all talked up a storm all afternoon and evening and Brett was an active part of all the stories and jokes.

In the background, I played a live set from the 1995 Orb tour. I wish I could find a copy of the Warfield show that so many of us saw, but the Prtland show from later that month is a good representative.

I did get a chance to speak to the primary Intensive Care doc. They got the results of his full body CT scan, and it was clean: no secondary infection. His ultrasound for internal clotting was good. He is still very jaundiced and has edema in both arms and legs that causes some discomfort. I believe they did not do dialysis today so that he could build up his breathing strength and blood pressure. But basically, there are no new internal issues that are interfering with his health. Just the one, big problem he came in here with, and the kinds of issues that spring up when you are confined to bed rest and pumped full of fluids without having a working set of kidneys.

When they threw us out for the shift change, D, J, Liz, and I went out for Thai. As is only appropriate. the service was a litlte slow and we had to rush back as I wanted to say goodnight. The staff were remarkably lenient and allowed me to stay up there for an hour past the end of the visitation schedule. So I finally got to meet Brett's parents and sit with them talking to Brett for that time. They are hopeful and like all of us were thrilled with his progress over the past days.

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I was back at 9 this morning. Brett introduced me to Velma, a nurse who has been with him for most of this stay, and with whom he has been a real Chatty Kathy. He says he got 6 hours of sleep last night which is a good night's rest for him these days. His breathing and heart rate were a few points improved this morning as well. I read all the updates and at Brett's urging wrote a reply or two. We took a call or two as well and Brett even held the phone himself.

We're out of the room right now so they can clean him up, change his bedding, and try to get him to sit up. He's scared by this, but it's nothing compared to being intubated. I am hoping they will let me back in soon, as I have to drive to the airport not too long from now. I am comforted by the fact that we've got the CO crew staying around to keep his spirits up, and LIz Jensen is visiting this weekend. I am going to try to wrestle my schedule into submission and visit again next week but circumstances may complicate that.

Like I wrote yesterday, my emotions are very mixed. His condition is terminal as it stands today. He would have to hang on for another 5 months to even have the possibility of going on the transplant list, and his history of alcoholism might disqualify him anyway at that point. The IC staff have been saying, basically, that miracles do happen, but they put the odds of a recovery at about 2%. His body is going to have to reboot itself, and no one can say for sure that there is even any healthy liver tissue left to work with.

The care level at this hospital is truly stellar. The Palliative team is doing everything they can to keep Brett comfortable. The IC team has fewer options, as noted above; there isn't anything curable they can work on, but they are doing regular diagnostics to make sure nothing else springs up. Everyone is a sweetheart and willing to engage Brett in odd conversational tangents.

I'm going to go ring the bell and see if they'll let me in now.

PS: They let me in. When I left Brett around noon they had moved him to a different chair and he was sitting up. He said he felt as good as he had since getting there. He said he was a fighter and he couldn't wait to see us in VT. I told him that would rock my world. That's where we left it. All of your messages were delivered. I left the book and the Orb-iPod.

Another snapshot: For some reason, we got to talking about web recommendations algorithms. I know, right? Brett recalled the early early days of Amazon, where for a few weeks it suggested for him ONLY 2 kinds of things: French Post-Structuralism collections and Pornographic comic books, and he thought, "Finally, someone understands me!"