As all is well, this is the "final post".

Wiley and I just got back from Dr. Eichbaums Office, where his CT showes that he continues to heal and mend. In fact no further CT's are even scheduled. Just a follow up visit in 2 months time. Unimaginable, no doctor visits for 2 months!

Thank you again to everyone who supported our family, whether it was in a tangible way through food, logistics, time or the lending of your particular expertise. Or through the offering of your thoughts and prayers. I believe that they all made THE difference in Wiley's recovery.

We are forever changed by this experience.

He is one lucky kid and we are one lucky family.

Blessings,
Nancy, Tim and Wiley

Everyday stuff is, sometimes, a fabulous thing

On Monday, Wiley’s first full day as a high school freshman, he got back his first test grade since his return to school. Drumroll. It was algebra. Sharp intake of breath. Hold.

An A-. An A-!

On an algebra test. You can bet his parents were pretty happy when he gave them that news.

I’d say he’s pretty well caught up with that class.

Nancy said he came home from school all smiles on Monday. I bet he feels kind of like he’s got his life back, and he's pretty happy about it. (He has, overall, been enormously sunny of mood and charming in his recovery. In fact, Nancy said she was kind of reassured when he got annoyed by her prodding about when he’d work on his soon-due 5-paragraph essay. He is, after all, 14, nearly 15, and a little surliness is to be expected!)

Wiley’s on track to perform a few pieces with his school (ArtQuest) orchestra in their first performance, coming up October 2^nd, in the evening. He’ll be playing standup bass. (If you are interested in tickets, give her a call or drop her an e-mail; she’d be glad to arrange that for you.)

Not much else is newsworthy, really. Which is, in and of itself, of course, newsworthy.

As Wiley’s trajectory has started to rejoin with the daily life of nearly any boy his age, the whole drive for the blog has also started to fade into my own rejoined daily life and that of his family. It has become more sporadic, I’m sure you’ve noticed, as the news is more and more simply normal life. At Nancy’s suggestion, I’ll plan on one more blog entry for Wiley, after he sees his neurosurgeon this Friday. After that, I think we can all become part of giving Wiley his own life back. He can once again become his own publicist (I told him I had been fulfilling that role these last weeks), select by himself what becomes public, who gets to hear what. Return to being a 14-, nearly 15-, year old kid. Who just happens to be really tall and have a really, really big scar on his head.

And who has a heck of a lot of people just thankful that he’s around.

by popular demand...

Here is a picture of the three of us. This is the one we put on a thank you card and dropped by along with home-made choclate chip cookies to the Critical Care Unit, the Truma Ward and the ST/PT and OT departments at Memorial Hospital to thank them for taking such good care of our boy.

Who is that small person?

Off to LA to celebrate Tim...

Did you see that streak go by?

Wy-man is bumping up to full-time at school... on Monday!

He did a couple of short days at school this week, and the next thing I knew, Nancy was talking to the speech therapist about when he could be there full-time. Because he really wanted to be. While going back to school was a little tough, being the one that left early kept him a bit out of the usual daily experience of all his pals, and really didn't seem necessary -- to him. Nancy talked to the counselor at the school, who gently probed "Who wants this to happen?" because he wanted to make sure it wasn't Wiley's parents pushing for him to be back so soon. "HE does!"

Within another hour or so, Nancy panicked, wondering whether this was really the right decision. She called Kay, Wiley's speech therapist while he was in the hospital. "Is this a bad idea? Is it too soon? Should I make him wait?" "Nancy," said Kay, understanding the real nature of the anxiety, "You can't break him. He'll be ok."

So, Wiley's back in school, soon to be full-time. The first day, not all of his teachers knew his circumstance. (Information system failure.) His algebra teacher, in fact, informed him that he was going to get a D- because he had missed so much school. (I guess she somehow managed to overlook the major scar on his head.) A couple more days, and things are mostly getting sorted out. He's dropped Spanish for this year, and he can't blow a tuba until January, so orchestra class will have to be satisfied with standup bass playing by Wiley for awhile. He's meantime working away on his own time, too, striving to make up for lost time with some outside help from his private bass teacher. "But," he says, "that Bach concerto is really hard."

Wiley can see best on his left side, because his left eye has a hard time tracking to the right. So you mostly see that side of his face when he talks to you, and he needs to sit on the right side of the classroom to follow what's going on at the front. (Of course, since he started school late, and kids seem to get locked into their seats, he doesn't have a lot of choice about where he's ended up sitting. It's not always in the best spot.) His eye doctor does think that the vision issues will clear up, and if they don't, surgery could fix them. His eye issue and the scar are by far, so far, his biggest apparent souvenirs of this wild journey he's taken us all on -- and for that we can all be grateful.

I left him on the steps at 7:55 AM

We nominate neurosurgeon, Eldan Eichbaum, to be named the deity of his choice.

Best night's sleep I've had in a long, long, time.
Nancy

Hi ho, hi ho

...it's off to school he goes.

Six weeks to the day after his accident, Lightning Boy will be headed off to his first day of high school, just a little later start than everyone else. With one heck of a conversation-starter head scar readily visible under the buzz cut he's managed to grow out so far (as you can see in this picture of Wiley and Tim, taken Sunday afternoon just before Tim headed back down to LA for this week's work).

To prep, Wiley's racing gung ho through as much schoolwork as he can to be caught up. He is madly learning Bach's Brandenburg's Concerto no.3 on his bass -- as well as other pieces for Orchestra, but the Bach seems the most daunting. He's also catching up with English class reading (Life of Pi) and essays, completing the last 2 assignments for Algebra that he needs to be up to where the rest of the class is, and, last but not least, consuming World History, on which he has a test his first day(!). He's also been conferring with his lockermate, who rather assumed it would be a semester, at least, of not having to compete for space. Wrong!

This weekend was an especially full one. It luckily started with Tim and bro' Steve making it back from LA Friday night instead of Saturday morning, a welcome reprieve. That provided a good bit of room for Wiley to have friends over on Saturday, catching up with some he hadn't seen since the accident. Sunday, Wiley, Tyler, and Nancy plunged into making an enormous four batches of chocolate chip cookies, so as to be able to bring a treat with the thank you message they are delivering this afternoon to: the ICU where Wy spent 9 days; the Truama/Neuro floor where he had his own "room" and was made as comfortable as possible while awaiting his final surgery -- nearly 3 weeks; and of course the "homies" of rehab who worked with Wy in the hospital and made it possible to get discharged from the hospital to home, instead of an outpatient rehab center.

It's got to be pretty wonderful for all those folks to see a kid go from comatose and having an uncertain prognosis to a kid walking in, saying thank you with cookies he helped make, and telling them that he's headed off to high school tomorrow. Six weeks after he well checked in.

I'm sure it won't be an easy transition, dropping into high school as he is, but I bet he finds his feet pretty quickly. It seems to be his way.

Flyin'

DO read the post before this one if you haven't yet.

I don't know about Tim (as he's off at work in LA), but I would say Nancy is very nearly more wiped out now, after getting Wiley's big school news yesterday, than she was when it looked like Wiley would be at home indefinitely. There's just something in the relief factor of getting a clear answer ("he's gonna be ok") when you've been in holding-your-breath mode for 5.5 weeks straight. Wham. Straight to the gut. Knocks that breath you've been holding right out of you.

Despite his mom's post-traumatic state of shock, Wiley and I got quite a kick out of teasing her about her apparent brain damage when I stopped by yesterday: she couldn't for the moment recall the name of the movie they'd watched the night before. And really, it's only a good thing when your kid who came out of neurosurgery 2 weeks ago is smart-alecky all over again, just like a 14-year old should be. (My role in the tease can only be justified, maybe, by my great pleasure in being able to join Wiley in carrying it out.) Wiley was all smiles, clearly delighted himself.

Here's how the school-next-week news unfolded, more or less. Tuesday morning Wiley had a speech therapy appointment, his first since leaving the hospital. It was specifically intended as an "assessment," and was the one outpatient care service he was signed up for. After hearing nothing from the therapist, Nancy called her up the next day. "Well??? What do you think? When will he be able to go back to school?" "Oh," said the speech therapist, perhaps even a little puzzled, "I don't see any reason why he can't go back to school now." Wham.

Of course, his parents had already made plans -- since he wasn't in school -- to have him reschedule a day's tutoring and go on a little trip. Wiley and Nancy are to fly down to LA the weekend after this one to join Tim for the award-night screening of the short film "Ed Meets his Maker," for which Tim has won a Director of Photography award from the Directors' Guild (!! go, Tim!). They still get to go and all be together for the big night; Nancy and Wiley just won't be driving back on Monday as they had planned. Yes, Wiley got a green light to from the neurosurgeon to hop on a plane and fly.

Why let a little traumatic brain injury keep you earthbound?

Posting comments FIXED!

Somehow or another the blog got set to restrict the posting of comments to only certain folks -- sorry if that made it impossible for you to get on.

It's fixed now, I think -- please give it another try (even if you'd given up on it before).

Lightning Boy!

Okay here's the bottom line-
Wiley starts High School at Santa Rosa High School Tuesday, September 17th at 8:00.

He will leave after hangin' with his friends at lunch for now, but that is OK by him.

I think he would start tomorrow if he could figure out how.

Yep that is 6 weeks to the day since, I just can't say it his way, well since the accident.

The past 2 days he has jumped though all sorts of hoops; cognitive, eye exams, tutors etc. Left us all scratching our heads, applauding and well trying to figure out how to keep up with Wiley!

We are blessed. Thank you all.

I am going to try to stop crying now...

Whaddup?

“What’s the best thing about being out of the hospital?” That got a quick grin from Wiley. “It’s all pretty good.”

What does he most want people to know about him? That’s easy: that visitors are welcome. (His mom stresses that she still wants them pre-arranged and limited to a couple of hours, though, just to keep him from getting worn out.)

As you can see from the latest picture, he’s started into his studies already (and his hair is starting to come back in; the staples, which were on the other side of his head, are already out). He’s met with his tutor twice so far, and reports that she told him he’s already – in two 1-hour sessions – gotten through the first two weeks of material he’s missed, leaving him just a week behind. He’s also working with her on history and English. He’ll be meeting with her for an hour each weekday, and doing homework assignments between. Today he’ll be going to his first session with his not-at-the-hospital speech therapist, the only outpatient therapy he’s got planned.

He has had one bass lesson since he’s been home, and said he pretty much felt like he had to re-learn standup bass; he spent the lesson doing scales. It might be because he’s been playing it so much less time than his electric bass, which he’s picked back up quite readily.

For an even better sense of how Wy’s doing, check out the top link at the left – video from this weekend of Wiley, Tyler, and Tim performing a song Wiley’s been working on, “To say the least.” (“Did you start it before or after you ate it?” “Before.”) There’s just a short glimpse of Tim on drums at the beginning, and then the camera had to be perched above Wiley at the piano to capture him and Tyler (on sax) in action. The piano is all Wy. Even one-handed when he turns to call his dad in on drums, though the camera angle sacrificed showing his hands at work in favor of keeping his face in view.

His grandmother Esther reports with a grin that he’s “getting ornerier,” certainly a sign that he’s all the more feeling himself and not shy about letting people know when he thinks they’re being stupid.

Did I mention that he loves having visitors? (Yes, but please call first!, says Nancy.)

Wiley’s goal with school is to get back to it by the end of September, or certainly by the time of the Homecoming Dance, October 6. (“Though he’s thinking he might not go,” says Nancy. “Why?” “Well,” says Wiley, “I don’t know who I’d ask.” “Yeah,” commiserates his mom, “it’s kind of hard to meet girls when you aren’t at school.” “Aaww,” replies grandma, “with Wiley, it’ll take all of 10 minutes!” That produced a slow, broad smile from Wy.) None of the folks orchestrating Wiley’s treatment have even hinted that such a rapid return to school is in the cards, but Wiley’s counting on it. And working hard on his homework in an effort to make it happen.

Visitors? Did I mention visitors? “Especially,” adds Wiley, “if they bring cookies or ice cream.” (Wiley has been the recipient of an astonishing assortment of cookie deliveries, including some from Aunt Barb in Michigan, Aunt Donna in the south Bay, and the very first batch of cookies ever, made by a friend’s 8-year old sister. He also got, from another friend, the largest container of heavenly chocolate Haagen-Daz ice cream that anyone has ever seen.)

Luckily, he’s pretty good about sharing.

State of Grace

It's been a busy week since Wednesday, Wy's staples are out for one. Our much beloved blogger Betty Andrews will submit an entry tomorrow after an interview with Wiley and catch you up on the Wy happenings.

Speaking of Betty, many people have passed along what fans they have become of her writing as well as a deep appreciation for her effort and thoughtfulness in keeping up the blog. Last night my sister Donna told me she checks everyday to see what Betty wrote. Donna said she knows that at some point Wiley's story will have a happy ending, but she hopes Betty will keep writing about something because she is hooked.

Tim and I have been grateful for Betty's gift of blog as well, I think if it was up to us the blog would have said: Really, really scared. Really, really tired. Really, really scared. Which would not have been comforting to anyone!

Many nights I would drive home from the hospital (.9 miles) , uttered a few exhausted pieces from the day into the phone and Bet would manage to turn it into something quite manageable and reassuring. For those of you who wish to thank Bet personally her email address is betandrews@gmail.com.

Also, I feel a bit embarrassed about the name of the blog. Long ago, in July, when I named the blog it was as a "nod" to Tim's beautiful short film, "State Of Grace", which is nearly complete. Even as we have tended to Wy and the holding together of our life. Fellow filmmakers and friends have been working in their "spare" hours to put the finishing touches on "State Of Grace" so that the fall film festival schedule can be kept on track. Thank you to all of you.

Which brings me to my final but huge point, both Tim and I have come to realize we could never begin to thank the many kind and generous acts that have been lavished on our family. Please know they are felt and appreciated and contribute to our collective healing.

Tim is heading to LA even as we speak. He and Steve are back in the fall TV grove/grind having completed "Bottle Shock" with an all nighter Wednesday night. They will be working on "Greek" flying home Saturday mornings, leaving Sunday evenings. I know it is to hard to even imagine. Keep a good thought for exhausted Tim.

On a much smaller note, I know I am way behind on returned phone calls and emails. Even if it is simly to reach out and say "hi", know I want to and will.

Oh ya and Wy says, "Mom don't tell people not to visit me"! Okay, Okay he's right, no reason he can't hang with his pals. But maybe call first and lets keep it to 2-3 hours.

With great appreciation,
Nancy

The new normal

So what do you do when you are 14 years old and not in the hospital, but not in school like all your friends? And you have a honking big scar with a lot of staples snaking its way across your skull, and nearly no hair? And your life is now strangely divided into, in your own words, into “before I ate it” and since?

Well, you certainly enjoy doing not much at home with your family. You watch some TV. If you’re Wiley, you even go hang out with your cousin, mom and dad, aunt and uncle, at a wrap party in Sonoma for “Bottle Shock,” the film Tim and Steve have been working on. (The crew working on the film were tremendously accommodating and supportive of the family in these last weeks.) You go with your mom to buy clothes for school on the conviction that you will soon enough get to go there. You rest. You talk to friends on the phone. You visit with a couple of kids who got greenlighted to visit over the weekend. You update your MySpace page.

And you take out the trash.

Yup. And all without a helmet, with the neurosurgeon’s blessing. And to think, just a week ago, he was having his skull reassembled in the operating room, a week before that still struggling to walk unassisted. A week before that, in the ICU, out of it enough so that a laugh with his dad was a big development. A week before that – well, we won’t even think about that.

Today Wiley is meeting with an at-home tutor, the first step towards rejoining the rest of the kids in school – the schedule for which remains unclear. He will also today get to meet with his beloved bass teacher to start back in again on his music training. He’s hopeful that he will be able to catch up with the symphony class he’ll be joining in school, and maybe even able to participate in a performance later this fall. Through all of this, his doctors and therapists will be learning more about what will take some time for him. The good news is that there’s really nothing that’s come up for him that isn’t improving noticeably already.

Till then – well, there’s plenty of stuff to work on. And music to play!

Friday, August 31st, 1:42 PM: Wiley walks in the front door of our house...

That's all I can say about that just now, we can't stop grinning!

Oh yes and no Santa Clara. The kid is amazing he rehabbed himself in the hospital with help of the "Homies"; Star, John and Kay as dubbed by Tyler.

He will continued out patient rehab from home, but he will not need to go to in patient rehab.

I know Wy's people can't wait to see him but I would like to have them hold off until Sunday/Monday and then call first for a scheduled time. (Wy is arguing with me about this as I type, music to my ears!)


love, love Nancy

Yippee, another night hangin' out in the ICU

Yes, the ICU -- but only because the hospital is so busy tonight. If he wasn't in the ICU, Wiley (and his mom) would be stuck in a room with another patient, and yes, the ICU seems more appealing than that.

Wiley's done great today, just still pretty worn out and cruddy-feeling from yesterday's surgery. He walked a little this morning, and his PT thought he walked better than before the surgery. He's having an especially hard time with his vision today, no doubt due to all the pain meds he again has to take for a bit.

Everyone seems to think it's going to be a fast recovery from this surgery. His neurosurgeon said Wiley'd for sure be out before he'd been at the hospital a month, and that's coming up on Tuesday. Nancy said she and Tim were kind of thinking he might even get home this weekend!

None of the hospital staff are really actively talking about the Santa Clara Rehab Center any more; the consensus seems to be shifting towards having him work with outpatient programs here in Santa Rosa.

What, when, how are all unclear -- but a fantastic recovery trajectory is not, because he's already on it. Butter-Side-Up kid, for sure.

Surgery went fine!

If long -- I think everyone's nerves were a bit frayed by the time 3 hours were up, as we'd been told it would take 2. It was longer just due to a little extra time and care to separate the brain from the underside of the skin (as best I understand it), and the bone flap went in fine.

Wiley's headed up to the ICU for observation for about 24 hours, and then he'll be back in a regular room.

Phewwww!

surgery's eve

Wiley heads off to surgery tomorrow morning bright and early (7:30 am start), but he gets to go in with a bunch of great news from today.

First, his speech therapist told him that she thought he'd be back in school before January. It's probably the happiest you have ever seen a 14-year old boy at the prospect of returning to school. I guess that means he has been doing his homework. And showing whatever else she was looking for in terms of his capacities to handle it.

His physical therapist also told him that he was very nearly graduated from his services as well (unclear if that as far as hospital-based PT goes, or PT in general). Nancy was also graduated today, with Wiley: she was given the green light to walk with him -- so they aren't just limited to wheelchair travel together. (I believe Tim's had that green light for awhile, but Nance has been a little less able and Wiley a little more in need of support by his walking assistant.)

A good hospital day for Wy.

Nancy was asking the nurse about why Wiley might have had a headache this afternoon (earlier than he had been getting them each day). "Do you think it's from all the walking we did today?" The nurse answered, as if instructing a small child, "Um -- it's because he's had a brain injury?" with the upward lilt intended to question whether the listener really understood after all.

The picture at the top of Wy was taken today by Nancy. He's looking so good, and surgery -- thanks to a shaved head, sutures, and such -- is definitely going to set his recovery of appearance back a couple of weeks, so she thought it a good idea to catch him now for you all to see. (He did get right of disapproval, which he waived.)

Hopefully it will also make the surprise of a Wiley with short hair a little less startling when you see him next, too!

Guardian Angel

New bat time! new bat place! Wednesday morning, 7:30 am -- Wiley, the neurosurgeon, and the bone flap will all converge in the operating room, and Wiley's skull will be reunited and made whole. At least that's the current plan, assuming the upcoming CT scan supports it. It is AMAZING what happens in surgery these days. Wy is pretty excited about the surgery -- mostly because he is ready to move on to the next thing, and that's the step that has to happen first. It's supposed to be a fairly "routine" surgery, as much as any surgery, much less neurosurgery can be.

Meanwhile, Wiley is spending his time doing occupational therapy, physical therapy, speech therapy (oddly, speech therapy is written homework of all sorts, and talking to the speech therapist about what's being asked of him, and why), reading, eating meals, playing guitar, and playing a mean game of cards. And sleeping. Oh, yes, that.

And he got to get reacquainted with his bass guitar yesterday. But he's still playing the acoustic guitar, too. As I hear it, yesterday Wiley entertained his family by playing and singing "Your Guardian Angel" by the The Red Jumpsuit Apparatus, a favorite from earlier this summer. Cousin Tyler joined in the singing. Wiley says his right hand is slower than it was, but otherwise is pretty able.

I'd say he learned that song at just the right time....

oops and Uno

Well, I confess I had it wrong about the school homework. Not that Wiley wasn't doing algebra and writing paragraphs, mind you, but rather that the assignments were coming from his speech therapist, not his school. (Since when does a speech therapist assign algebra homework??? I have to say, I have a feeling this rehab stuff is going to be pretty confusing....)

Yesterday afternoon I found Wiley and Nancy sitting outside on the patio by the hospital, surrounded by the garden and the adjacent tree canopy of Santa Rosa Creek, playing a killer game of Uno. Wiley, as is apparently the norm, won. Just because he has a helmet on to protect his head, red racing stripe hospital socks on his feet, and is sitting in a wheelchair -- oh, yeah, or has had a serious brain injury! -- does not mean he is impaired in his Uno game in the least. He's able to get out to the patio with his mom because she is up to wheeling him, though not giving him the support he'd need to walk there safely. But he has been walking similar distances when he has a physical therapist there to spot and support him.

Nancy relayed that Wiley has been reading a good bit -- even an hour at a time out of the new Harry Potter, despite his vision issues. That's a pretty impressive degree of perseverance when you have to work to keep from seeing double. From what Wiley showed me yesterday, it seems like his left eye is limited in its ability to track towards the right. But again, the ophthalmologist gave him good odds on eventual full vision recovery.

Nancy and Tim, while they are holding up remarkably well, are both profoundly exhausted. Tim has continued this last week to work on the feature being filmed in Sonoma County, coming home to spend his evenings at the hospital. He took the night shift last night after his full day of work, sleeping in the 2nd bed in the hospital room. Nancy is the first to arrive in the morning (usually 7am) and the last to leave at night (making sure Wiley actually gets to sleep at a reasonable hour), and spends almost all of the day in between with Wiley in his hospital room, making sure he gets the care he needs and doesn't get too freaked out by all the unexpected twists and challenges of this difficult and new circumstance. The stress and need for constant attention to what's best for their oh-so-dear son is draining to both of them, and I know neither is getting as much sleep as they could use.

Thank goodness for the extended family! Even though most of the grandparents live some distance from Santa Rosa, they have all been showing up in a nearly daily way, as have Wiley's Uncle Steve, Aunt Deb, Cousin Tyler, and a few other stalwarts, both related and chosen family. All have been helping out in the ways they can, whether it's getting chores done or keeping Wiley company or just keeping Nancy and Tim feeling supported. And then there's all the messages of good wishes from near and far, also a tremendous boost to the family.

And thank goodness, too, for Wiley's incredible good fortune and good humor. Two more pieces that make this wild ride bearable for all who love him.

y = 3 + 4x

"Where is he?" asked the woman, in a hushed voice. She had stopped by to see how that unfortunate young man with the massive head trauma was faring. "Oh," said Nancy, "he's over there on his bed doing his algebra homework and writing paragraphs for his English class."

Can you believe it?

Nancy told me today that Wiley has been doing homework the last few days that had been sent home by his school. In fact, she said, she'd already caught him Tom Sawyering it. His teacher had asked him to write down each of the medications he was on, and what for. "Well," he argued, "not even the nurses know everything I'm on. I just asked [nurse] Maureen to find out for me and write it all down!"

His ophthalmologist came to check him out yesterday and also declared Wiley an extraordinary anomaly. He's definitely got some vision impairment, but especially on the left. There, he has problems in the middle and lower zone. But the doc said that there are 4 muscles that control the ability to see that area, and that 3 of Wiley's are intact -- given him very good prospects to recover that vision. "I've never seen anything like it."

On the Nancy front, she proudly announced today that she had showered AND WASHED HER OWN HAIR. Yes, this is a major development, you may clap.

A note from Mom/Nancy

Hey everyone, I am home for 2 hours-ish paying bills (life goes on... ) while another member of "Team Bellen" - Grandma Esther, is playing checkers with Wiley or better yet borring him into a nap.

Wiley handled his disappointment today wonderfully. He walked with the Physical Therapist and myself up to ICU to visit the nurses- with his helmet! Round trip is about a 1/4 mile.

Those ICU nurses are terrific and have a hard job. Apparently it is pretty rare when one of their head trauma patients walks in for a "hello". They assured me Wiley will be talked about around there for years. He came back to the room and played 2 whole songs on the guitar, one is an original he wrote this summer, the other is one he was practicing recently. A couple nurses from is floor filtered in to hear and watch, none could speak. Up till today he had been working on tuning in drop C and found that a block to playing. Our beloved OT John looked on the internet figured out how to tuned him to a drop D and though Wy wasn't entirely pleased, it suited to begin playing. Thanks John!

The term divine intervention was bantered about, I have no doubt. Thanks for all our your collective prayers, they were not in vain.

I saw Wiley's CT and it looks so much better even to me, but I can see why they decided to give it another week. In the big picture hanging out in the hospital another week is really nothing.

Thank you Betty for keeping everyone informed about Wy's days and progress. It is such a gift to us all.

State of the Parents up-date:
Timmers is running ragged from work in Sonoma and back. I know that the kind of work he is doing as well as the people he is woking with, who have been amazing and gracious, and knowing "team Bellen" is helping out at the hospital make it all do-able for him. And I am feeling better. Monday was 6 weeks and it was a significant "feel better" marker.

love, love,
Nancy

Hotter Still, Thursday am

No surgery till next week -- on the schedule for Wednesday, 29th.

The CT scan showed that while Wiley's brain is doing great, it's still a bit swollen and they need to wait longer before replacing the bone flap. Wiley's reportedly a bit disappointed, but adjusting once again to this further change to his life calendar. (Getting word that he was maybe going to have the surgery tomorrow, all of the sudden this morning, of course, had required its own adjustment!)

Hot off the wire, Thursday morning

Surgery #3 will be tomorrow!

Turns out next week's surgery schedule is busy enough that they've decided to move Wiley's bone flap replacement surgery up to FRIDAY, 8/24, time as yet unknown. The swelling is visibly down; they will do a CT scan this morning just to check everything out prior to going in. I think they were mostly thinking of waiting till next week as Wiley's neurosurgeon is still on vacation till then.

The partner of the neurosurgeon who took the flap out will be doing the surgery. Nancy and Tim have a good relationship with him, as well, and have been assured by all that he is an excellent surgeon, so they feel entirely fine about it and are really pleased that Wiley will get to move on to rehab sooner -- presumably sometime next week, presumably in Santa Clara.

All good.

Life at the Crash Pad

OK, here’s what a difference a couple of days makes: Wiley held all those (family members) present in his room tonight captive to his wishes. When Tyler asked for one of the cookies that Sean had made just for Wiley, Wiley replied that before he’d let Tyler have a cookie, everyone there would have to agree to play Uno (a card game) with him. Nothing like a little power when you are stuck in a hospital – thank you, Sean!

As Nancy relayed this story to Tim, just arriving at the hospital at 8:30 at night after a long day of filming in nearby Sonoma, she added, simply, “He’s baaa-aaaack!” in that menacing way reminiscent of the Chucky horror films.

Wiley, despite being suddenly abducted to Planet Brain Trauma, is recovering a recognizable degree of his Wiley-ness.

His parents have dubbed his room the Crash Pad.

Yesterday, the Crash Pad was enlivened as a result of another patient being assigned to the second bed. A twenty-something, foul-mouthed, loud, smoking patient -- rather unpleasant and even alarming. With the intervention of several advocates, the hospital was finally convinced that “Hurricane Dean,” as he was soon named, was really not an appropriate roommate for a brain-injured 14-year old. Call it luck, call it persuasive argument combined with persistence, but the kid got what he needed, and Hurricane Dean was on his way. Grandpa Alex took the bed instead, company and a watchful eye for Wiley in the wee hours.

Today, the occupational therapist who has been working with Wiley came in on his own time and spent two hours playing guitar with Wiley. The therapist let Nancy know just how very lucky Wiley is in his recovery so far. “He’s one in a million,” said the OT. “This is what makes my job worthwhile.”

Tomorrow, race car driver Buddy Rice is stopping by to visit with Wiley in a photo op related to some large donation he’s making to the hospital. He wanted to visit with an adolescent who was a patient, and guess who that would be. (Ok, he may be the only teen in the hospital at the moment!) And you thought a stay in the hospital would be dull.

I realize this sounds like surely the visitation rules have been relaxed. Nope. It really is tiring for Wiley to turn his attention from one person and conversation to another, so Nancy and Tim are continuing to try and limit the brain overload caused by visitors. It’s also a bit of a vulnerable place to be, in a hospital room you can’t leave, with a requirement for a helmet on your head and a steadying hand nearby whenever you get out of bed to visit the bathroom. So family members are one matter, but pretty much everyone else is going to have to wait until he gets back from his stay at the rehab center, expected to be around late September.

In addition to Wiley showing all the more of his Wiley-ness, here’s the other great news: he’s able to create new memory. He remembers life before the accident, and now he remembers things that he has learned since the accident. For example, he remembered that he had seen me since the accident and before tonight. He knows that he was injured in a skateboard accident, and that he will have to have surgery, and that he will soon be spending some weeks in a rehabilitation center. He also knows he needs to not get out of bed without a helmet and assistance, and boy, does that ever make life easier on those that are on Wiley duty!

Nancy and Tim wanted to relay that they are absolutely blown away by the generosity of their community: relatives, friends, friends of friends, even remote acquaintances have all been showing up in unexpected ways, largely in the life-sustaining way of delivering food to their door. (Thanks also go to friend Jay and the online dinner calendar he set up for making the times of need clear and the delivery at least semi-orderly!)

Backwards by 3’s is forward!

Yesterday Wiley got a full workout by the physical therapist (PT), occupational therapist (OT) and speech therapist (whom I’ve never heard called an ST). Arm exercises, leg exercises, hand-eye coordination exercises, with a few cognitive tests thrown in to boot.

He was given a sheet of paper with an oval on it and asked to draw a picture of himself. He added a simple set of lines for eyes, nose, mouth. (Yes, symmetrically arranged!) “Do you want to add some more?” He provided more detail to represent a more three- dimensional set of those features, carefully added some ears, and then felt his head with one hand. Next he added scalp stubble. “Want to add any more of yourself?” Then came a shirt, arms, shorts, legs, and shoes. (“Are you an artist?” “I draw some.”) Lastly, he meticulously added two hands, each with seven fingers. It was a great picture that showed Wiley’s great capacity for thinking, executing (no one-sided neglect), and remarkably good hand-eye coordination for his state… and one of the little hiccups that show up even when everything else about his brain seems to be working just fine. (The therapist did break it to him that he had had a slight mishap with the finger count, but that he had done a wonderful job with the drawing.)

There were also a number of memory questions posed to Wiley yesterday: Did he know what month it was? “Yes, August.” The day? Not really sure; “Maybe the 18th?” (Pretty darn close; remarkably so, considering how he’s spent the last week and a half). The year? “2007.” Did he know where he was? “It seems like UC Santa Cruz” (the last place he spent a chunk of time away from home), “in a medical facility.” No, Santa Rosa, at Memorial Hospital. Did he know why he was there? “I hurt my head.” Did he know how? “In a skateboarding accident.” (That was the first time he’d replied correctly on that one!) Could he tell the therapist something particular about his Grandma Linda? “That’s not her natural hair color.”

Another challenge: “Wiley, I want you to count back from 20 by 3’s, and stop when you run out of numbers.” He closed his eyes and was quiet for a long time. “How are you doing there, Wiley?” “I’m done,” he replied.

(After she explained that he needed to count out loud, he proceeded to do so without a hitch.)

The look of the next couple of weeks is something like this. Wiley will get his bone flap in maybe Monday of next week. They’ll keep him at the hospital for a few days to make sure there are no infections or other surprises. Then he’ll head off to a rehab program, expected to be the one in Santa Clara, which has a very well-respected brain trauma rehab program and a patient population that includes other teens, which seems like a really helpful part of any rehab program for Wiley. (The one locally in Santa Rosa doesn’t handle patients under 17, pediatric cases.)

In the meantime, the rehab staff that work with Memorial’s patients are doing a great job working with Wiley, to allow him to keep gaining ground and keep from getting bored. (It’s a fine line, keeping Wiley from getting bored and keeping Wiley from getting over-stimulated and overloaded!) And Wiley? He’s asked how soon he can go back to school, and is pretty sure he should be allowed to get up and skateboard over to a friend’s house.

Self-propelled Wy

Nancy reminded me today that I had not yet mentioned that for the last 3 days or so, Wiley's been up and walking short distances (e.g., 100 feet), with a little assistance. His double+ vision and unsteady coordination makes walking rather taxing for him and rather exciting for his assistants. He even has been showering solo, a big step forward in anyone's independence!

Aunt Deb is taking night duty at the hospital tonight, Nancy will be there tomorrow, and Tim is actually going to head off to work for the day in Sonoma. It's wonderful that he has an opportunity to work at a location so close to home; it makes it much more conceivable to give it a try.

The private hospital room is really helping everyone's sanity. Tim and Wiley were actually able to sleep last night. The last few days Nancy has been arriving even before Wiley awoke. (She brings him an early breakfast, which he's ready for, and then he's hungry again by the time the hospital breakfast arrives. She says it pretty much goes that way at every meal: he's eating 200% of his hospital food allocation. Nancy thinks he might be 6'6" by the time he gets home!)

There's still no clear timing on when the bone flap replacement surgery might happen. Maybe Wednesday. Maybe Monday, a week from now. Maybe Wiley will head off to a rehab program then; maybe there'll be enough improvement and enough services locally that he won't. All still clear as mud.

Nancy and Tim send their thanks to all for being so understanding about the need to limit visitors for now.

Rest, rest, and more rest

Red alert -- visiting needs to go on hold for awhile!

As Nancy says, Wy has something like 30 or 35 interactions everyday with the medical staff, and when you start adding more people to the day, it adds up to a heck of a lot of interactions for a kid with a brain injury, for whom any interaction is tiring. Tim and Nancy are realizing now that their green light on starting visits was premature. Sorry, all! It'll change at some point.

Yesterday Wiley got moved into a private room, thanks to his mom and dad's consistent effort. Well -- private, but with the big benefit of having a second bed for mom to nap in during the day while Wiley's asleep, or dad to attempt to sleep in at night. Tim's big coup today was to get the nursing staff to eliminate all unnecessary and disruptive visits between 10:30 pm and 7 am. Yes, he actually thinks it will be helpful to Wiley's healing to get sleep.

Wiley's got a few big, apparent brain function issues right now. He's seeing double or quadruple (can you imagine how hard it would be to feed yourself in that circumstance? But somehow he's managing. I think it must be pretty tiring in and of itself to always see multiple images of what you are looking at.) Wiley told his mom today that he can't really picture his room at home. He also seems to have trouble creating new short-term memories. He keeps trying to get up out of bed, even though he's not really stable enough to do so without some help and even though his parents keep explaining to him why he can't. It's hard to tell how many of these challenges are only for now, and if some might persist.

On another note, Tim's been trying to find a helmet to fit Wiley that has some degree of "cool." Tonight's try wasn't quite big enough to fit Wy, but Tim decided he should maybe keep it for himself. If you don't know, Tim's also been doing his own fair share of skateboarding in the last couple of months, ever since Wiley got his longboard and Tim decided he'd really enjoy one, too. So, yes, it would be perhaps surprising to see a 40+ guy skateboarding back from the grocery store -- but maybe even more so to see someone of that size and age do so in a charcoal skateboard helmet. But how could he not?

"Can you give me an E"?

Well, Wiley's apparently not lost his pitch, despite the brain trauma. Nancy and Tim had brought in his guitar even while Wy was in the ICU, though he had no interest in picking it up until yesterday. At that point, he asked for his guitar, but seemed to find the one he was handed oddly proportioned. "It's the small one, honey," said Nancy. He handed it back, "I don't want it." On her next trip home, Nancy picked up the full-sized guitar. This time when she handed it to Wiley, he strummed it and announced "It's out of tune. Grandma, can you give me an E?" He took a stab at tuning it, but handed it over to the nurse, who offered to give it a try. Wiley took it back, strummed, and confided to his mom "It's still out of tune."

The physical therapist (PT) supplied him with a red rubber pick, which is easier for Wiley to hold than the slick hard plastic one he usually plays with. He's now playing his guitar.

Nancy and Tim say that they and Wiley are laughing through much of their time together. He's really handling the discomfort and indignities of this time with astonishing good humor, which is really helpful for everyone.

Other kids are starting school this week in Santa Rosa. Thus, when Nancy got home the other day, she was only initially surprised to get a message from the school to let her know that Wiley had been absent that day. "Hmmmm," she reflected, "I guess I better get that paperwork filled out (that Sean's mom had picked up for her from the school), or Wiley may flunk out before he ever gets back to school!"

Nancy and Tim want to let folks know that while Wiley is now in a position to see occasional visitors, they need to keep visits very restricted, for a couple of reasons. First, there's just not much room in his room, which he shares with 3 - 4 other patients and a nurse. Second, he just gets pretty tired with all the physical therapy they are trying to do with him, and he needs to save his energy for that. Lastly, he just doesn't have a lot of capacity for extended interaction. So they are going to restrict visitors to only those who arrange a visit directly through them, and keep the visits down to about five minutes. They appreciate your understanding and cooperation.

A question came up about Wiley getting mail these days. Since the duration of his stay at the hospital is a little unclear, and Nancy and Tim are pretty much there around the clock but make multiple trips home each day to their house (about 5 minutes away), it's probably easiest if you just mail anything for Wiley to his home. Nancy and Tim can then bring it to him with minimal delay.

Change of scene

Yesterday afternoon (Wednesday), Wiley moved out of the ICU!

His move was to what they call an "observational" room in wing 1E at Memorial. Apparently they put folks there that are well enough to move some but disoriented enough to not necessarily make great choices for themselves (e.g., walking out of the hospital). Nancy, Tim and Wiley all seemed to find the change of surroundings a great improvement. Being there just seems a little bit more like regular hospital time and a little bit less like being surrounded by acute crisis. Wiley is sharing the room with 3 - 4 other patients, and Tim and Nancy are making arrangements to mostly be there with him on a continuous basis for the next few days.

Wiley is now unattached -- without tubing.

Tim reported that yesterday they shared a number of laughs, and that Wiley's humor is very good. Nancy said that Wiley even managed to find some humor in occasional gaps in his brain - mouth operation; when he strung a number of words together that made no sense, after a period of coherence, Nancy asked him if he was speaking gibberish. "Probably!" he answered.

Wiley also stood up about 3 times on Wednesday. He's clearly getting stronger and his coordination is improving steadily. The physical therapy - occupational therapy guys have already started working with him, though his endurance is pretty limited as yet.

He's doing great.

A good day for a fart joke

Wiley is about to move out of the ICU! This is a great sign. They are going to move him to another wing of the hospital that is termed “observational.”

And the word today is that, contrary to what was said previously, Wiley will NOT be going to a rehab center until after he has the surgery to replace the bone flap in his skull. So that means another 1 – 2 weeks (that part remains unclear!) at Memorial Hospital before he has that surgery. One additional hurdle remains before he can be transferred to a rehab center: he needs to be able to persist through 3 hours of physical therapy each day. Meanwhile, though, he will get rehab while he remains at Memorial Hospital.

Wiley is now eating on his own. And eating is something that he proclaimed today, much to Nancy’s amusement, he’d rather do than see any of the numerous girls who have been by the hospital to see him.

A few other heartening interactions have happened in the last day and a half, too. First and foremost, he and his dad shared a laugh over a joke, the first laugh witnessed by his parents. Of course it was a fart joke. He also told his Grandma Linda this morning, “I love you.”

Check out the couple of links on the left that were recently added, if you haven't already: they are recent videos on YouTube of Wiley playing music (one, in his dining room; the other, at rock and roll camp at UC Santa Cruz).

A day for “hey” (Monday)

Monday, Wiley not only got to lose his oxygen-assist mask, but he got to have a bath. Well, the kind of bath you get to have when you are still pretty well restricted by tubing to the confines of a hospital bed, but a bath, nonetheless. It’s a definite sign that things are going better when the ICU nurse finds time for clean up and is not completely preoccupied with tracking the ups and downs of all the monitors. In fact, at this point, Wiley is down to a paltry five or six monitors, a very respectable number, but one that looks nearly inconsequential compared to the bank of them he had going before.

Wiley’s parents have been on a campaign to try and give him an opportunity to rest – not a high priority for the ICU, generally, but one they think makes sense given what he’s been through and the substantial effort that they can see it takes for him to be present and engaged in his surroundings in any way. Yes, they even get the nurses to turn out the lights sometimes!

Wy has continued to keep his eyes closed most of the time, and is just beginning to verbalize in a way that is recognizable with more certainty than conjecture. A couple of Monday’s interactions were of note. At one point in the day, his Grandma Esther was in visiting, and he reached up to touch her face -- the first specific reaching out to another I’ve heard of. Then in the evening, he had his first in-person visit from long-time best friend Sean, and they had a full teen-aged boy conversation: “Hey,” said Sean. “Hey,” responded Wiley. Nancy, who was also there, explained to Sean that they had brought in the piece of leopard-skin fabric that Wiley had at his side (remnant from a jacket-decorating project he’d carried out a couple of months ago) because he seemed to like having something in his left hand, and the sheet he’d been fingering had been replaced by a pair of pajama bottoms. Wiley’s response to Sean? “I don’t even care.” The boy’s looking for some dignity, Mom!

An occupational therapist friend told me yesterday that injury to the lower back part of the skull often resulted in a lot of visual sensitivity due to the part of the brain affected, and that may be part of why Wiley continues to keep his eyes closed so much. She also said that a typical response to sensory overload for brain trauma patients is to go to sleep. So both those factors may be part of what’s going on with Wiley right now. It may also be due in part, of course, to his continued medication for pain; they switched him Monday from morphine to another, so his behavior may also change a bit out of that.

Conversations are continuing about his rehabilitation center placement. His neurosurgeon expects him to stay at Memorial Hospital for about another week, and then go to a live-in rehab center. Once again, it seems the case manager is talking about sending him out of town to Sacramento (UC Davis), San Jose (Santa Clara Medical Center), or Oakland (Children’s), each of which have pediatric rehab centers for traumatic brain injury, or TBI. (Wiley would still have the bone flap missing from his skull when he left, and would use a helmet to protect his brain for about the first week. Then he’d have a surgery to replace it, possibly via a temporary ambulance transfer back to his neurosurgeon and Memorial Hospital.) Nancy and Tim are doing their background research to find out which one seems to offer the best circumstances for Wiley, and they are ready to do what it takes to get him there.

[You may notice that this has been posted Tuesday morning, rather than Monday evening. That is likely to be my continued pattern, as I am returning to work myself and will probably write blog entries on the bus on the way in to San Francisco in the mornings, the better to incorporate all the news of the day without staying up so very late!]

Slowly up from the depths

If you come up too fast, you get the bends, right? Wiley’s coming up slowly. He did get his brain monitor out this afternoon, and it was apparently pretty painful; the nurse had to dose him with morphine, which pretty well put him back under for a while. (He even started snoring, which pretty quickly had his exhausted mother napping herself, in a chair in the corner of the room.)

It’s been a very tiring day for Wiley, starting with the CT scan this morning, then the breathing tube out, then the brain monitor out, and culminating tonight with the struggle to find his bearings and a comfortable position despite his brain fog. Without the restraints, but with the neck collar, foley, IV, and a supplemental oxygen mask (his oxygen level was low this afternoon, so they gave him an external mask with moist air, the better to help his throat recover), Wiley was only a little limited in his ability to move. Earlier in the evening, Grandma Esther sang to him, and that seemed to keep him quiet and calm, but when the music ended, the gymnastics began.

Turns out both his dad Tim and Uncle Steve, neither diminutive guys, as well as the nurse, were needed to keep Wiley from tying knots in his remaining tubes. He was even up on his knees at one point. It took all Tim and Steve’s strength to keep Wiley from getting completely twisted up. While they are very glad to have him out of the restraints, it looks like it’s going to be a pretty demanding job to let him stay that way. Wiley was asked by the nurse for the second time tonight if he was in pain, and since he indicated yes (a nod) this time, he got some morphine and is now resting a bit more quietly.

Speech is still beyond him; he tries to speak but cannot formulate words, though he can make some garbled sounds. Luckily nodding and shaking his head seem to be pretty manageable for him, and that will do for now.

A breath of fresh air - the midday Sunday report

In the last couple of hours, Wiley shed his breathing tube and feeding tube!

He's now breathing on his own, and sleeping deeply for the moment. His mouth is free of tubing, though he still has a tube that goes through his nose down to his stomach and the monitor in his brain, which exits through the top of his head, as well as an IV. It wasn't an easy process for him, or for his parents to witness, but when the ventilator was shut off, he did what it took to get breathing again.

He also got to shed his restraints. Later today he is expected to lose the brain monitor. Tomorrow, once they've confirmed that he can swallow, he'll lose the nasal tube as well. And once they can communicate clearly with him and can confirm that his neck feels OK, they'll take of the neck brace, too. He'll be down to the foley catheter and IV.

Tim said that the first thing Wiley did after getting the restraints off was to stretch his arms over his head, arch his back and settle back down into a more comfortable position. When Tim's mom asked Tim if Wiley had said anything, Tim said, No, just sounds of relief as he stretched. But Nancy just told me that when Tim had told Wiley "You're doing a great job, we love you," he was pretty sure Wiley responded with "I love you," too.

More later.

The boy takes charge

Well, one tube came out today – the one Wiley managed to pull out this afternoon by moving his head! Luckily, it was one the docs had decided was pretty well good to go: the tube draining the fluid from his brain. Mind you, he managed to do this under the nose of the very attentive nurse whose only charge is keeping Wiley in the “good” zone... but with about 12 different monitors, multiple machines, and Wiley’s physical “comfort” (ok, that’s a stretch) to keep up with, you can imagine she’s kept pretty busy.

More impressively, he made his wishes known for his morning’s music. He decisively turned down his mother’s offer to next put Ani DiFranco on the ipod, with a distinct turn of his head left and right. It might have been our imagination, but he even seemed to realize that his mother was poking fun at him (she knows he dislikes Ani).

And there was more. When the neurosurgeon came in, he asked Wiley to lift his left thumb. He did. Then he asked him to move his left leg. He did. Then his right leg. He did that, too. (I’m not sure I could remember which was which myself if I was sedated and in a hospital bed, head injury aside!) Nancy read messages to Wiley that friends had sent in cards and notes, and he also seemed to take in the names and good wishes, as well as the information that he’d had a head injury and was in the hospital. His color is also better, and the swelling is down. They’re continuing to reduce his medications today, too.

Better news still came tonight.

They think that tomorrow -- providing the CT scan in the morning is consistent with what they expect -- they’ll be able to take out the breathing and feeding tubes as well as the probe that monitors pressure in his brain. And Monday… send him off to the rehab hospital! With a helmet, because he’ll still be missing his “bone flap” for a bit longer yet. (His family is thinking to get some adhesive letters to spell “C-R-A-S-H” across the front.)

One point the nursing staff have made repeatedly is just how great it is that Wiley ONLY has a head injury. So many folks they deal with that have head injuries also have other internal and/or musculo-skeletal problems to deal with. It’s part of why Wiley is expected to have a better recovery trajectory than many.

The relief of all this good news is letting his extended family hospital team really feel the full weight of their exhaustion tonight. Which is really ok!

Sweet dreams, all.

"He's doing great!"

So said Wiley's neurosurgeon tonight.

What a change a couple of days can make!

The doc also said they may be able to remove the brain pressure monitor tomorrow. That and the breathing tube are apparently the biggest impediments to allowing Wiley enough out of sedation to allow him to communicate readily. It's also probably going to be a lot more comfortable for Wiley to not have that tube in. Most likely it will take a couple of days to get to that point.

They're expecting to start backing off on the breathing assistance provided by machine tomorrow, so that Wiley can begin taking over on his own. As he proves able, they'll keep backing off further until the breathing tube can come out. The sooner he gets the tube out the less chance he'll have of contracting pneumonia. Pneumonia's certainly treatable, but it would slow his recovery process a bit. The doctors don't want to restore the missing piece to his skull until they're sure he's pneumonia-free.

The medical staff also talked with Nancy and Tim today about the fact that Wiley's personality will probably be affected at first, and that he may be angry and irritable. It typically takes about a year, apparently, for someone's innate personality to return after a head injury.

Wiley's probably still looking at another week in the ICU, but at least it will be properly scored: as of this evening, he's got his ipod nano going in his room. (No head banging allowed.) When Nancy and Tim went in earlier, they found him with a TV earbud in his ear and they said "hey, we've got something better!" Apparently the audio stimulation is now a good thing given where Wiley is in his recovery process.

Most likely Wiley will get to leave the ICU once he gets the missing piece of skull put back in. (In case you are wondering, they apparently keep the skull piece in a freezer or refrigerator in a very, very well marked bag. Not like in my freezer.) Rehab will probably start while he's recovering from that surgery; still in the hospital but out of the ICU.

AND -- best of all, the 72-hour window of greatest concern is now closed. Day 3 is done. HOORAAAAAAAAYYY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The family is so grateful for everyone's kind words, prayers, thoughts, acts. There have been an impressive number of expanding circles of folks providing prayers and spiritual requests of all flavors for Wiley's recovery. Cards and blog comments and e-mails and messages have been steadily arriving. And those dinner providers -- you folks have been tremendous! It provides the one time when Wiley's extended family can gather NOT in the hospital, and it has been a tremendously welcome and refreshing part of what has quickly become a nearly (bizarrely) routine, if exhausting, day.

The mid-day Friday in-progress report

Nancy and Tim spent part of today talking to a case manager about where Wiley might go for rehab -- what a change of conversation! Since they don't absolutely have to have Wiley in a facility in Santa Rosa, they are going to be checking out places in some surrounding communities, too, like Oakland, Kentfield, Sacramento/Davis, Santa Clara.

They'll have a chance to check out some of the places on the internet over the next couple of days. Some of these places are also sending up people to evaluate Wiley for fit to their programs. Nancy's mom and stepfather have offered up their 5th wheel in case Nancy needs to go stay elsewhere with Wiley while he's in rehab.

The report from the doc today is that tubes may start being able to come out this weekend, allowing Wiley's body to take over some of the things that machines and meds are doing right now. That, too, is welcome news.

"Your smile is the best thing I've seen all week!"

So said the case worker this morning when she saw Nancy at the ICU.

Nancy had talked to Wiley's nurse this morning, heard about Wiley's night (he'd waken up enough to pull out of his restraints amd started to pull out his tubes; they'd told him where he was, that he needed to leave the tubes in, that his parents had been there but were now home sleeping, it was the middle of the night, and he needed to rest. Astonishingly, he did settle down. They said it was extremely unusual for head injury patients to follow instructions; they are usually too confused. They did put him in "big boy" restraints, nonetheless, to be sure he doesn't hurt himself.)

When Nancy went in with a big box of thank you crossiants for the nursing staff, the nurse with Wiley, Rob, met her with a hug and tears in his eyes. "Tell him good morning" he said. Nancy did, and Rob said "Wiley, open your eyes, it's your mom!"

AND HE DID.

Nance said it was clearly Wiley in there. Wiley eyes. He could only keep them open briefly, but long enough to know it was him. She told him that visiting hours were over and she'd have to go, but that she and Tim would be back, that he was doing a great job and he just needed to rest and get better.

That's when the case worked came by, also visibly moved. She said "We've got to talk about rehab." "Wonderful!!!! said Nancy. "We're gooing to need to talk about where to have him do his rehab." "Wherever it needs to be!" said Nance. ('Cause really, could there be a better thing than getting to talk about rehab when you've been worrying about sheer survival????) Another nurse also came by, smiling and tearful. Clearly, the staff in the ICU were feeling like things had taken a remarkable turn for the better. And they would know. Nancy came out of the ICU beaming.

A happy morning on the Wiley road, to be sure.

In case you are confused by "butter side up"

(from an e-mail that came in yesterday)

"I hadn't understood the "butter side up" mantra until now and not knowing if you did, I am forwarding this request made by a friend who learned of Wiley's circumstance:

'The toast is in
the air, so to speak, and we're asked to focus our
prayers on assuring that it lands
with the butter side up.'"

Well said.

Road trip

The day began with a CT scan for Wiley. In which -- still in a drug-induced coma, mind you -- he tried to sit up and managed about 20 degrees! That's not supposed to happen, but we take it as a good sign - he wants to act and his will is strong.

The nursing staff had to be a bit more active in managing Wiley's functions after the scan; someone said, "Well, it's kind of like he's been on a road trip" (short a distance as it might be) "and he's just got to get settled back down again."

Nothing really remarkable on the CT, which is also really, really good news. The doc said that if Wiley remained in the state he was in, he wasn't even going to do another scan tomorrow. He also said that tomorrow they'd bring him out of the full coma, though I'm sure he will remain sedated.

This afternoon, the docs decided that Wiley really wasn't getting quite as much oxygen as they wanted or expected, and they ran some tests and found that the lower part of one lung wasn't really working effectively. They conducted some sort of saline wash of the lung to clean out any material that might be reducing function. But they didn't seem to find it particularly worrisome, though of course it doesn't sound good to anyone in the waiting room.

Today Nancy put a bit of a lockdown on visitation, keeping the visitors down to her, Tim, and Tyler. Their working assumption is that speaking quietly to Wiley with their familiar voices and providing their physical presence will be comforting to Wiley, even fully sedated. They brought in more pictures of Wiley to put up in his room, telling him what each of them were. They'd also brought in some cards that some of the neighborhood kids that Wiley's known his whole life had made and dropped by the house in the mailbox. Later this afternoon, Wiley's friend Kurt and his mom also brought by two poster/get well cards that he and his friends had made for Wiley, covered with messages from friends and photographs. Tim and Nancy brought those in for Wiley tonight.

Then the big surprise -- the docs started to reduce the sedation meds tonight, along with some other drugs being used to manage his blood pressure and lord knows what else, and while it might have been just a reflex in response to a bump of the hospital bed, it might not: Wiley opened his eyes a couple of times, and his mom and dad saw him. Just for an instant, but he seemed to be there. Later in the evening, Tim was holding his hand, and Wiley started to pound the bed with his hand. Then he started to move, seemingly agitated at all the tubes and equiment. Nancy and Tim were taken aback. They told him he needed to calm down, it was ok, they were there, he needed to rest. "Does it bug you when I touch you?" asked Tim. He nodded slightly. They asked him to squeeze their hands, and he did. He also opened his eyes, looked at them, and sunk back under. The nurse, who wasn't watching during all this, was dubious when they told her that Wiley was responsive. So she made him her own series of requests: wiggling fingers and toes on each side. He responded with each as requested. (Function on both sides!!!) Then she said, "If you're in pain, squeeze my hand. If you're not in pain, don't." No squeeze. Wow. Wow. Tim came out to the waiting room near tears as he relayed this. Nancy stayed in, told Wiley that he needed to be quiet and rest, and that they were going to go home now but would be back in the morning. As she said, with that kind of send off, she might be able to go home and pretend -- for just a little while -- that life was going to be normal, and she thought they should take it and the sleep it promised.

The nurse today told Nancy that head trauma recovery is not a linear process, it is a series of waves, ups and downs, moves forward and moves back. A pretty bumpy road for family and friends to travel with Wiley, but its the road we've got, and we're taking it.

(I was corrected today on timing for the days of greatest concern because Nance cleared this up with the doc: it was 1-3 days after the original surgery, not the second one. So one more day to spend on this particularly scary stretch of road.)

Day 2, down.

Why a swollen brain is a problem

(This was written by a doc who is not involved in Wiley's care, but wanted to explain why his doc was doing some of the things he was doing.)

The brain swells up considerably during the first several days after trauma. Wiley's brain sustained some injury as a result of the original trauma but the most important thing right now is to limit any further damage caused by brain swelling in response to that trauma. Since the brain is housed in a rigid shell, if there is no place for the swelling to be released then the swollen brain would get pushed down towards the spinal cord which is the only opening there is. But that is also where the blood supply for the brain goes in and out so if the brain pushes downward through the opening than it would effectively cut off its own blood supply which leads to death. This is why it is so essential that the brain be allowed to swell outwards through openings made by the surgeon. That is why a portion of the skull was removed (temporarily). There is also now a catheter into the center cavity of the brain that can monitor pressures every second and let the doctor know when it is getting too high.

Another way to help the brain not swell is to force more carbon dioxide into the blood stream. This is done by hyperventilating the patient. Wiley is on a ventilator to make this possible and he is on medication to keep him in a comatose state so that they can keep him quiet while he is on the ventilator. Once they are certain that the risk of brain swelling is over, they will reattach the portion of skull bone that has been removed and take him off the ventilator and reduce the medications that are sedating him. It is only after that point that we will really know how much damage to the brain there is. But even then, it will take many weeks to understand the full extent. Brain injury recovery is measured in weeks and months and sometimes years, not days.

Seven boys, three skateboards

(Relayed to me by Tyler tonight - as best I can capture it.)

Wiley, cousin Tyler, and friend Sean were out roaming the neighborhood by skateboard yesterday afternoon. They met up with four other boys that are friends of theirs, out walking. That gaggle ended up at the top of the hill on a street near friend Will's house. Wiley wanted to go down the hill, but was a little daunted at its steepness. He was worried he might crash. Ty reminded him to carve turns to make the slope more manageable. A couple of the boys headed down the hill to keep an eye out and warn off cars. Wy took off, while Sean and Tyler decided they'd rather walk halfway downto make the trip more manageable.

By the time Sean and Tyler passed Wiley, he was down. They were absolutely certain Wiley was faking them out with the jerking movements of a seizure because of his worry about crashing from the start. They taunted him accordingly -- until they realized that his elbow was bleeding and he really had crashed. Suddenly it all became clearly very serious. They thought through what they see on TV and checked his pulse. Then -- sure enough, they realized they needed big guns, 911. Tyler pulled out his cell phone and called. The paramedics talked him through what to look out for till they got there, what to do. Then a woman drove up who had seen Wiley go down -- apparently the only one who did, as the boys at the bottom of the hill were looking the other way and didn't even know he'd crashed till Sean and Tyler got there. She was able to tell the paramedics where they were, as the boys were a little fuzzy on street names.

At that point Wiley apparently started to try to get up, and she held him down to keep him from moving. (Tyler thought she might be a paramedic, based on the questions she was asking Wiley.) Within about 3 minutes, the ambulance arrived. They put him in a neck brace, got oxygen going, and told the boys to head home. Tyler went to Will's house and called his mom. "You're kidding, right?" "Nope, Mom. I'm serious. He's at Memorial Hospital." She was finally convinced, ending up heading directly to the hospital while Tyler waited for a ride. Will's dad, arriving a bit later, took Tyler over to the hospital, too. Tyler called Tim and others. Ty's Dad, Steve, when called, also was initially dubious about Tyler's story. I think we can all appreciate the sheer unbelievableness of this reality, true as it is.


Tyler's mom, Deb, asked that I let you all know that Tyler is really doing pretty well. She said that she'd had a long talk with him about his own healing process out of this trauma, and that it's already underway.

Uncle Tim and Aunt Nancy are enormously grateful for, and proud of, Tyler's good judgment in realizing that Wiley wasn't faking it and needed help, fast. There's no doubt that it made a big difference in how quickly he got treatment and that may make all the difference in his trajectory.

Good job, Ty.

Helping with dinner - the new scoop

Mea culpa! in my morning haze I made a bad link to the Dinner Calendar link (see it to the left?) -- it's now fixed.

It turns out that everyone gets kicked out of the ICU from 5 - 6 pm each night. So -- if you sign up for dinner this week, while Wy is presumably in the ICU, the ideal thing to do would be to deliver dinner to Tim and Nance's house at 5pm, ready to serve. Probably a good idea to have enough food for at least 6 people if you are bringing it this week: the extended Tribe of Wy is sizeable and it's handy for Tim and Nancy to be able to offer food to some of the other members of their support network.

To arrange the delivery for any food, call Linda Stewart (Nancy's Mom) Cell 707-272-3731. If you want to help with other logistics of life (whatever those might be; it's unclear), you can also check in with Linda.

Another day, another surgery

Wiley had a second surgery this afternoon: the neurosurgeon re-removed the piece of skull so as to further relieve pressure on his brain. He was also able to put a catheter in the brain so as to remove some of the fluid that was collecting there, apparently a placement that is not an easy job to get done right. As grim as all that sounds, he said that the surgery gave him everything he wanted: the CT scan looked better than it was last night, the brain looked soft (I assume as opposed to swollen and tight), and the pressure was reduced to the desired range, and stable. He had also confirmed this morning that the second clot hadn't grown, more good news.

Yet he reminded us all: the first 2-4 days are about survival; after that, we can think about recovery. Day 1 down, and Wiley's still up and in the ring.

Wiley is in a drug-induced coma for the next day or two, for healing. They reduced his sedation this afternoon a bit, and the nurse (who has been absolutely incredible, say Nance and Tim) reported that he seemed responsive to her request to squeeze her hand. That is an incredible beacon of hope to all.

His parents and family are able to sit with him quietly, a couple of folks at a time. He's expected to stay in the ICU for at least a week or so.

Fingers crossed.

How to best help Wiley

For now:

Pray, beat on drums, invoke all the spirits you know.
Repeat "butter side up" in your mind as many times as you can.
Send loving thoughts to Wiley and let him know that he needs to pull through.

Food is probably going to come in handy; Nance and Tim and their support crew are going to need to stay up on food, whether they like it or not. It would probably be best to use the dinner calendar (see link at left) to let the family know what to expect when and to stagger deliveries. Ideal contributions would be things that could be frozen, or are frozen; they should be ready to microwave (or oven/stove, if microwave is not possible) heat and eat.

To arrange the delivery times for any food, call Linda Stewart (Nancy's Mom) Cell 707-272-3731. If you want to help with other logistics of life (whatever those might be; it's unclear), you can also check in with Linda.

I'll keep the blog up to date as more info comes in about Wiley's conditions.

Shift your prayers to Wiley, II

10:30 pm Tuesday post:

Wiley was in a serious skateboarding accident this afternoon. He took a hard fall, fracturing his skull and causing an unknown level of injury to his brain. His cousin Tyler was with him and quickly placed a 911 call, so thanks to Tyler, he got help just as quickly as possible.

Wiley is just coming out of surgery now; the surgeons have "elevated" a piece of his skull to give them access to a blood clot identified by CT (and possibly to alleviate the effects of swelling, though that is a bit fuzzy). The skull piece will remain elevated for 5-6 days. His prognosis is unclear, and I/we really don't know more than that as yet. More info may be available from the surgeon tonight. Wiley's to be admitted to the ICU at Memorial Hospital in Santa Rosa.

Tim and Nancy keep reminding themselves and everyone waiting tense and red-eyed that he is the "butter side up" kid, and they have to trust he will stay true to form.

I'll let you know if there is more information available. Meanwhile, prayers will have to do.

___

That was the 10:30 pm Tuesday post; here's the post-midnight update:

"Critically ill" is the short answer to how Wiley is doing, said his surgeon. He also said he was "confident" about Wiley's recovery, but that there were no guarantees. Yup, just that reassuring. Keep up those prayers.

The surgeon said that he had actually replaced the piece of skull after addressing the clot, as the pressure in Wiley's head was normal. There is a smaller second clot in a different part of the brain that they will keep an eye on; it might possibly intervention later. He'll keep Wiley in a medically-induced coma for a day or two to facilitate recovery and to help keep brain pressure low. Wiley is expected to stay in the ICU for a week or more. No certainties in any of this except the uncertainty of it all.

Tim and Nance will get to check in on Wiley tonight, and Tim is going to stay while Nance heads home for hopefully some sleep so she can be back in the morning.

For those of you who are wondering about these details, Tim fortuitously happened to be working in Sonoma County this afternoon, and was able to get to the ER lickety-split after getting the call from his sister-in-law, Deb. Nancy was unfortunately still on her way out of San Francisco, where a friend had driven her this afternoon for yet another surgeon check-up. So she lagged a bit behind, but at least had a friend behind the wheel -- she is still not feeling up to driving, though the surgeon told her today that she had the green light to do whatever she wanted, that her surgery was healing fine. (Unfortnately, she also told Nance that she seemed to be sick as a result of all the antibiotics and should go see her regular doc to get straightened out. Nance was at least glad to know a reason for why she still felt so bad.)

The mantra: butter side up, butter side up, butter side up....

Shift your prayers to Wiley

Wiley was in a serious skateboarding accident this afternoon. He took a hard fall, fracturing his skull and causing an unknown level of injury to his brain. His cousin Tyler was with him and quickly placed a 911 call, so thanks to Tyler, he got help just as quickly as possible.

Wiley is just coming out of surgery now; the surgeons have "elevated" a piece of his skull to give them access to a blood clot identified by CT (and possibly to alleviate the effects of swelling, though that is a bit fuzzy). The skull piece will remain elevated for 5-6 days. His prognosis is unclear, and I/we really don't know more than that as yet. More info may be available from the surgeon tonight. Wiley's to be admitted to the ICU at Memorial Hospital in Santa Rosa.

Tim and Nancy keep reminding themselves and everyone waiting tense and red-eyed that he is the "butter side up" kid, and they have to trust he will stay true to form.

I'll let you know if there is more information available. Meanwhile, prayers will have to do.

It's out, it's out, it's out, it's out, it's out!

The last drain is out.
Yayyayayay I still have to blind my middle but I will see Dr E. again on Tues and if I can do even less (!!!!) than I have been until then- she said I am a green light and can even ride my bike.

Friday it is then?

Friday I am back to SF with a very generous friend willing to fight traffic and drive me into the city to see Dr Eskanazi before she disappears for the rest of the month on vacation, (Eskanazi not my freind). Will the drain come out? Seems unlikely.

Wiley will preform Friday night at Rock and Roll camp at UC Santa Cruz to an audience of Grandparents and maybe a Counsin/s and Auntie and then home on Saturday. Tim has started an new movie in Sonoma. We had always planned for him to go back to work on the 1st. We just got lucky with his first ever project in Sonoma County. Home at night, which is good as I am not exactly ready for prime time.

Another friend came, stayed the night, passed some time and got me off the nasty Percocet. So I am even slower now than I was which is unimaginable, but narcotics do have a "sell by date" on them for me. Who would have thought I'd have a drain in FOREVER. As long as it is in, no Advil or the like. So I am even slower as Tylenol is my only pain friend now. Thanks MJ.

And my hair washed again. Heaven!

A shower but drain still in...

go figure. I am past understanding at this point, back tomorrow for drain out?!

Fluid Trivia

Just by looking at a carrot, you wouldn't think 90 percent of it was water. It is. It is even waterier than the angle worm at 80 percent.

And no, fluid is not trivial in my life yet. I have to go to SF to get drained again tomorrow. Sounds vaguely vampire-like, but not in any way sexy. (Yes, some people think the whole vampire thing is sexy)

P.S.
I don't regret any part of my decision, but this process bites!

Poetry is where I go when it gets kinda rough. It's been kinda rough.

Sweet Darkness

When your eyes are tired
the world is tired also.

When your vision has gone
no part of the world can find you.

Time to go into the dark
where the night has eyes
to recognize its own.

There you can be sure
you are not beyond love.

The dark will be your womb
tonight.

The night will give you a horizon
further than you can see.

You must learn one thing,
The world was made to be free in.

Give up all the other worlds
except the one to which you belong.

Sometimes it takes darkness and
the sweet confinement of your
aloneness to learn

anything or anyone
that does not bring you alive

is too small for you.


by David Whyte
From "The House of Belonging"

Passing time, holding court & receiving serenades

The nice thing about holding court at home (because I am still holding fluid) is my lovely and talented friends and family come by to entertain me. Sometimes with their children. A couple of days ago I was treated to a visit by my friends lovely 20 year old daughter home from college and fresh from globe trotting. Just this hour I was serenaded by another friends 9 year daughter who belting out "memories".

I am pretty sure if all things were equal these visits would not have been apart of my week. There is something special about watching kids grow up.

Not to mention my own kid who has been a peach and serenades daily and nightly songs he has written and plays from the piano and acoustic guitar.

All in all not bad way to pass time but still I am ready for the next phase...

humm what to update, well no shower yet.

I continue to heal great. And feel kinda ready to be active, well you know sort of. But the fluid problem continues. I am a fluid rich girl. Tim took me into SF again today and again the great disgusting draining process was performed- but this time I felt better. And I promised to wear my corset all the time. NO lapses. So we will see. The Doc was great and said she would be "on call" for me as soon as I could get the out put level down she would meet us wherever she was working that day and take out my last drain. I don't even hazard to guess anymore when that might happen. Maybe Friday.

Also I am way fortunate that my friend Shell is generously continuing her hair washing services as clean hair goes a way LONG way. Thanks Shell!

I keep feeling better though, and my abdominal muscles feel remarkably normal. I can't wait to ride my bike and drive a car and be autonomous . That said, I couldn't be luckier for the care and feeding I have been treated to by my family and friends. And Tim. I don't even know what to say to you, you have been there, on call 3:00 am - 12:30 am. You have been exactly right.

Not to worry- Tim has conveyed that my last post made no sense at all

and then he gave me that look. It's not the first time Tim or any one else has given me "that look" and I am very sure it won't be the last.

At the risk of attempting to breathe life into a groaner- the "joke" involved a late 80's reference from Johnny Carson, when Carnac the Magnificent was asked what was the day before the hostage's were taken in Iran. Day Oh, Daaaay Ohhhh.

Okay writing that now, even I can see it was obscure.

All progress is as it should be body-wise. Friday was a pretty good day and I will hope for more of same over the weekend.

love, love Nancy

Day O or is it Day Oh?

Well the news from SF is it's a no go for removing the remaining drain and the "corset". That also means no shower. Maybe monday?

Let's see, counting from today Monday will be Day 4, counting from the day before surgery Monday would be Day 1, 2, 3 ... Oh My God!

Sweet Oreo center's, corsets, and the best joke I heard today.

Apparently it is not obvious to all that that is an Oreo cookie I am proudly displaying in the photo. Therefore, the eat the sweet creamy center first metaphor stuff might have been lost on some of y'all.

Not to worry I am looped on Percacet and sound like this all day long. (Even more than usual.)

Okay I can see why women left the whole corset idea behind in favor of comfort as well as women's lib. This new "corset" I am wearing day and night to keep the draining manageable may off-set my girlish figure nicely but it blows.

The Joke:
The Defense Department briefed the President this morning.

They told Bush that 2 Brazilian solders were killed in Iraq.

To everyone's amazement, all the color drained from Bush's face, then he
collapsed onto his desk, head in hands, visibly shaken, almost in tears.

Finally, he composed himself and asked, "Just exactly how many is a
Brazilian?"

The dreaded double lower lip.

When our son and his best friend were younger, 7-8ish and they wanted something, they would both push out their lower lips at the presentation of a request. They felt that the dreaded double lower lip would make us more sympathetic to their request in advance. It worked, nearly every time.

Yesterday felt like the dreaded double lower lip looked.
Oh ya and we didn't pass out, that's the best thing I can say about the day.

Today is maybe a single lower lip day.

It turns I am not draining as well as would be best, so yesterday the Doc pulled a bunch of fluid out of me in her office in SF right in front of Tim and me and our amazed eyes.

Today more slow yuckines, then back to the SF doc on Thurs, and then..

A SHOWER.

Do I hear angels singing?

That hospital smell is NOT me, ok maybe a little....

My friend Shell washed my hair for me today in her shop. Lowered me down nice as you please to the basin in her salon and back up. No discomfort! What a gift. Clean hair after 7 days - and no, it is nothing like camping.

How to leave a comment - the low down

OK, are you ready? See the little note at the bottom of the post that says 0 or 1 or 3 or X comments? Click on that. Then a page will come up that shows comments others have posted, but ALSO a white box that says "Leave your comment." Type into that box whatever comment you want to make, then hit the "publish your comment" button at the bottom. Voila! you are done.

- (Bet, posing as Nance)

Day 1 home- I slept 10 hours!

Thanks for your good thoughts, and emails. I know some of you are having a difficult time posting and want better instructions. I am getting your email wishes though so not to worry. I will have a smarter person than I or maybe just someone on less Percocet than I respond with clearer post instructions soon.

Speaking of Prcocet I am backing off quite a bit and am glad to do so as I enjoy thinking.

Also, the "broken arms" thing isn't anywhere as intense as I feared. No washing my hair and stuff but propelling my self and typing until I tire seems to be OK. All pretty manageable I am pleased to report.

Love N

Life outside the box.

Home. Hmmmmmmm. That is the sound of a purring house nance.

How does if feel?
Last night it was my idea to mark the day, the change of circumstance and the future with a champagne toast!
My first sip of champagne in 17 years, also my last.
But yah it's like that.

love, love, Nancy

Why does it smell like hospital at home? Uhh...it's you

It was hell getting Nancy home today. Not surprising. There is a business to be created: design a vehicle with super soft suspesion , big balloon tires, and nothing but pillows on the inside- so any body position can be acheived. An ambulance light on top and a quiet police escort. A great rental income!

Friday/summer get-out-of-San Francisco-to-Santa Rosa (50 milies) in only 2 hours. Yikes.
But Nancy is home and has only two drains to deal with - small miracle. We'll head back to the doc on Monday for a check-up. Betty and Nancy had their best night, last night. Grandma Linda (Nancy's Mom) fed and watched over Wiley and Tyler the last couple of nights. Donna (sister) will be here for the weekend. Esther will also be part of the food crew this weekend.

Thank you all for your thoughts and comments in the blogasphere.

Rollercoaster Room, we will not miss you!

BURN ALL THE FILMS

What this is all about. Yeah, the tummy tuck that goes with breast reconstuction is nice and all... but it's hard to imagine anything topping the surgeon comming into the rollercoaster room, handing the pathology report to Nancy and saying all the tissue is CLEAN! " You can frame this report, and burn the films if you like". HELL YES!
I quickly imaged stacking all the years of momogrames, x-rays, MRI's, biopsis, diagrams, letters, folders, emails and pathology reports into a wobbling 6 foot tower - perhaps adding a little karosene, and torching it. Then just standing close in the heat of all that fear and swearing at it until it was ash. Add more karosene and burn it again.

Layers.

Turns out one can hold one's breath longer than one thinks.

Dr. Grissom gave us this amazing news at 12:20. It's been easier to breath since.

Nancy decided not to go home today. Seems a shame to leave the rollercoaster room so soon. I'll check her out tomorrow The baggage already seems lighter. Betty has been the overnight stormtrooper, thank God. She'll be back at it tonight.

Thank you all for your love thoughts.

Tim

Old lady in a brand new 20-year old's body

Maybe it's always true in the morning that the last 24 hours in a hospital have been hard (nights are so rarely easy there!) -- but these last 24 hours have been HARD ones for Nance. Yesterday morning, under Reb's care, she must have had the hardest 3 hours yet, with her surgeon doing procedures, flower deliveries arriving, housekeeping coming and going, nurses' visits, Tim and the boys due any minute, pain and general mayhem. Yes, she's now unplugged, a very happy thing, but it doesn't make moving about easy -- just possible. Still exhausting.

The promise of getting to go home today on Wednesday definitely provided a bright beacon of future pleasure through a fine afternoon with Donna, though the pain is taking constant attention to medication to stay managed. Last night the challenges of getting in and out of bed, manuevering (sp?) to the bathroom, linen management, etc, all became a more real and daunting thing, and she's spent some time this morning figuring out what it might take to make that work at home (besides lots of help from Tim and mom Linda!), as well as putting a call in to the surgeon's office to see if she'd be better off staying put one more day. So very many logistics to consider.

I am perhaps not proud of this, but I do have to say that last night had me in nearly uncontrollable laughter as Nance made fun of her pseudo-old lady self in her new (proclaimed by Reb) 20-year old's body, hobbling to the bathroom in her gaping hospital gown, pain pump in a fanny pack slung over her shoulder, with her hair pulled bun-like on the top of her head, glasses a bit askew. It was a sight.

Tim will probably post a bit later today with the news of whether it's off to Santa Rosa today for Nance or not.

NANCY UNPLUGGED! One night only

After a rough start with too many nurses and not enough wisdom between them, Nancy's long day improved. By Noon she was unhooked, unplugged, unimpressed. However, being her resiliant self, she focused on the positive and had much more perspective than I. So now she sleeps her final night in the Rollercoaster Room with the hope of a pain-free night sleep. Nancy unplugged is a much happier animal. Yes her final night with Betty as wingman, yet again. Go Betty!. Rebecca and Donna were the day-team until Betty could get back this evening. I brought Wiley and Tyler down for a short visit and a lunch worthy of the hospital cafeteria reputation. I'll go early in the Morning and nurse-willing, we'll have Nance out of there by 11am.

Good night
Tim

Good night, bad night

Good in that Nance slept! (me, too!) Maybe even 7 hours' worth. Good in that last night I found chicken broth, carnation instant breakfast, & jello - yum! - to help slake the hunger of a woman who's been on a weight-gain campaign for weeks and hasn't quite made the transition yet. (And let's face it: an IV may carry nutrition, but it really isn't very satisfying!)

Bad in that the pain is really settled in, the road out looks long and rough, and Dr. Eskanazi, while she didn't come in last night to stitch up the navel that needs a suture, has yet to arrive this morning. And that the arrival will bring that suture and more potential for pain. Bad in that last night's nurse kept attaching things to Nance's gown directly over incision sites and then arguing that it shouldn't hurt because, after all, she hadn't touched the skin. Bad in that no position can possibly be comfortable. I think it's going to be a hard day for her to be anything but (afraid and) crabby.

She looks forward to seeing who has written in with a Blog comment (I am up on the 3rd floor right now, scamming off a neighbor's internet, just to be able to bring an updated computer back down to her on the first floor -- which seems to be virtually sealed off from the airwaves). Phone calls are a bit tiring and she's been relying on others to field them, so writing in on the blog is really a great way for friends and family to send nonurgent messages her way.

Say hey.