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
Friday, August 31, 2007
Thursday, August 30, 2007
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.
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.
Wednesday, August 29, 2007
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!
Wiley's headed up to the ICU for observation for about 24 hours, and then he'll be back in a regular room.
Phewwww!
Tuesday, August 28, 2007
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!
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!
Monday, August 27, 2007
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....
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....
Sunday, August 26, 2007
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.
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.
Friday, August 24, 2007
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.
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.
Thursday, August 23, 2007
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
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!)
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.
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.
Wednesday, August 22, 2007
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!)
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!)
Tuesday, August 21, 2007
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.
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.
Sunday, August 19, 2007
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.
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.
Saturday, August 18, 2007
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?
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?
Friday, August 17, 2007
"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.
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.
Thursday, August 16, 2007
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.
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.
Wednesday, August 15, 2007
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).
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).
Tuesday, August 14, 2007
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!]
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!]
Sunday, August 12, 2007
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.
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.
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.
Saturday, August 11, 2007
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.
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.
Friday, August 10, 2007
"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.
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.
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.
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.
Thursday, August 9, 2007
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.
"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.
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.
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.
Wednesday, August 8, 2007
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.
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.
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.
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.
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....
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....
Tuesday, August 7, 2007
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.
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.
Friday, August 3, 2007
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.
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.
Wednesday, August 1, 2007
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!
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!
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