John working hard and making progress (pics from pops)

Big John's 30th Birthday Bash and News from rehab by longwinded biggs mama

As I arrived back at the entrance to Fanny Allen around noon yesterday, the ambulance attendants were wheeling in a precious bundle just as a week ago Biggie J was wheeled in, and that memory flashed before me. I'd been hearing multiple daily reports of Biggie's progress, and so was prepared to be dazzeled by his footwork and handiness and speech. And as usual, Biggie exceeded the reports. He continues to be a miracle in ridin high tee shirt and baggy sweat shorts. I truly believe in the power of prayer, and with so many praying for him... I have to ask... "who am I going to believe, the doctors or Biggie?" My bet is on the tow headed boy grown to a man! Not to say that he doesn't have a mountain to climb, but he is! Almost by the minute you can see the reconnections being made. It's frustrating for him to find the words... and some times they come out "turkey" or "what kind of car is that? to which he replies "an 86 tofurkey", but then he breaks through with a sentence and I burst my buttons.

Dr Knackle gave Pops and me a long detailed projection of John's recovery outlook, and trust me, it was not what I wanted to consider or believe. 80% was never a passing grade around our house, and still isn't. If he'd said 92% recovery... well maybe... but 80%... he can't be talking about our boy. He's already exceeded preliminary recovery projections, and I have no inclination to believe Biggie J will give an ounce less effort to his recovery than he does to anything else he sets his mind to.

Oh yeah it's true today he can't remember a story you told him an hour ago, and hears the story of his accident as if each time is the first time he's heard it. His short term memory is damaged, and will take a lot of work. But that's the kind of challenge John thrives on. At times he seems to realize where he is, but mostly he doesn't. Not Yet. He doesn't recognize that he can't get out of the bed without help, and we have to keep a steady hand on him or he'll fall out of the bed and hurt himself as he did the other night. Remember when you were a child and you thought you could fly? That's about where Biggie J is at, and it's up to all of us to protect him as he relearns everything.

It's also true the food there is less than appealing, so he is really enjoying the gourmet food that his friends are bringing in to him. Tonight he had a tasty meal from the new Thai restaurant in Winooski courtesy of Aaron. If you'd like to bring him lunch or dinner and spend some time with him, please call his cellphone so we can coordinate it. Seeing him and talking to him will lift your spirits more than you can imagine.

Now here's the idea Pops and I came up with this morning, and need all of you to pull it off. Lee from Higher Ground suggested we do another benefit for Big John in a month or so, and October 17th just happens to be his 30th Birthday. We would like to plan Big John's 30th Birthday Bash for that day. His projected discharge date from rehab is October 2nd, so he will be ready and eager to see all of you and listen to some good music. I've called Adam King, of the Mafia, and he's into it and will start making some calls. I'm putting it out there to all of you... will you help make Biggie's Birthday a Day to Remember?

And one more thing... Big John needs a place to call home when he's discharged. This is a topic that is keeping me and Pops up nights now, trying to figure out what will be best for John. We'd like to stay here at Russell street, it's wonderful in so many ways, but we do have some concerns about the long stairway and 2nd floor bathroom with the fantastic designer tub/shower. It would be easier for him if we could find a single story home (without stairs) that still offers easy access to the downtown area and his shop. Erik and Ana have been so generous in providing their home for our use these past two months, and we deeply appreciate the sacrifice it has been for them, especially given the robust Burlington rental housing market. If you can help us with this dilemma, please call John's phone, or place your comments here.

Thank you all for your prayers, your support and your devotion to Big John, he's coming back to us... SOONER than later.
Much Love and Gratitude from Biggie's Family.

WITHOUT AND WITHIN by pops

Outwardly John is making tremendous progress doing a morning and afternoon lap around the nursing station/elevator rectangle, over 400 feet each jaunt. The first was in a high rolling walker with arm support, the second in a more or less conventional one He tended to pigeon toe leaving the PTs to help him with that today along with balance and right side mobility and strenth. John gloats with the attention and praise from the rehab staff.

But do to his periods of agitation, confusion, non acceptance of his limitations, and escapism (houdini his new nickname) the staff decided it best for him to resrict visitors to immedate family and a short list of 4 or 5 closest friends as determined by his mom and I. Many visitors have delighted him but it is alway what is best for John as determined by the staff. I have attended almost all rehab sessions this week and am astounded by thier methods, professionalism and results. in the future, I am sure visitation will open up. thanks for your understanding and tremendous support we have received.

I have some walking pics on his phone but am too luddite to post. pops

Thumbs up

More pictures, these courtesy of John's Aunt Cynthia

My dad the day after the benefit concert. How happy!





The new mural at Riding High

COMPLEX MIND STATE by pops

Neurologists have adapted the rancho los amigos scale from 1 to 10 to describe patients emerging from coma and help their family and friends understand what they are going through. level 1 is comatose, 10 nearly "normal" The levels are not hard and fast but John is mostly in level 4 moving into 5. On the phone and with old memories is is fantastic and often totally present but has difficulty with time (monthwize) and like my mother after a right side stroke usually unaccepting that his present situation and immediate future have changed. At times is knows he is in rehab but then will ask "what is this place." We have showed him pictures of the accident and he seems to understand but then does not remember a short time later. At times are periods of confused agitation. I suggest those of you who visit look over the scale and use extreme kindness and consideration.

ater a day of rest yesterday rehab sessions resume this morn. I expect him to be close to a walker by the time his mother arrives wed. BUT the forest is deep and difficulties and trials are yet to come. pops

John and his nephews, courtesy of Rachel

For those who aren't able to go by and see him, thought you'd love to see how he's looking these days.

WALKING by pops

The morning PT/OTers had no plan to help John walk yesterday but during a session of kick and batt the beach ball a couple of time he leaned forward from the padded platform and put some air under his butt as if trying to stand. So after transferring back to wheel chair they asked him if he wished to hug his dad which he did wih thier help. Then with a therapist under each shoulder and me trailing with wheel chair he took 20 or so steps, sat down and rested a then took a few more. The last under the eye of his doctor. Early in the day I chatted with Dr Knakel on J's progress and likely condition on release. Latter is to early to tell but progress remarkable considering severity of injury and temp and pressure spikes in brain during coma. he said the staff will meet tuesday to plan therapy and reestimate discharge date.

Less spctacular but as significent is J's improved speaking skills. (makes sense about half the time which some friends have said about me) No wanting to overdo it the afternoon PT/OT mostly involved rapid leg work work on an experimental bycycle machine and right hand exercises. J's right leg is equal to his left but right arm and hand were definately hurt in fall and are weak.

Will and Kaitlyn at the shop provided me with trucks, bearings, and wheels for his new skateboard so I will see if he can put it together (but not try) today. pops

back on wheels by pops

In early afternoon John discovered he could unlock the brakes on his wheel chair and propel himself. Under my guidance we took a couple spins around the halls. He tended to turn right but as adept in wheelchair from a broken fibia at about age 14 he quickly was able to maneuver. The PT/OTs cheered as we went by their office.

As significently the brain/speech conection improved and J spoke more clear words as the day went on, iincluding "fine, how are you" to his doctor." Early in the day PT/OT put him in a device called a standing frame which locked his feet and knees and supported his weight with a harness across his butt. He beamed standing at a table and thumbing through Arizona Highways.

Dr Knackel warned me on admitting him that rehab sometimes goes fast. weekend here ---visiting hours ARE 9 TO 9 except during rehab. pops

atempted to stand by pops

6 weeks back this early morn I arrived at the ICU to find John in pretty bad condition. he peaked a few days later with 14 tubes and 12 wires into him. thus yesterday it was a joy to watch hime sleep for an hour to the greatful dead after busy hours of rehab. More movement in his right hand and arm every day and some shaking head no to questions, BUT a nurse still described him as waking up and requested I remind visiters to limit time, turn off TV, speak slowly ina normal voice, ask simple questions and give time to answer. communication rules afre posted on wall in room. visiting is 4 to 9 daily, more sunday but not sure of hours.

big news of day was his attempt to stand during afternoon PT. we had him in the gym and with many onlookers J could not concentrate on kickball. the therapists noticed he was triing to lean forward and push with his left arm so with the help of 4 twice got him momentarily up on his hind legs as our brand of primates and endeavered to perfect for a million years. Far from walking but he got the urge. gotta crawl first. pops

Our Amazing Biggie J by biggs mama

It's been just about 6 weeks since Big John went down, and this is the first day I felt relaxed enough to sleep in and wake without worrying. It's good to read the positive comments about Fanny Allen rehab, that support the feelings I got being there. John looks and acts mellow, except for his decision to yank out his trach tube! I'd been asking when they would remove it, as he obviously didn't need it any more, but Dr Knackle said "since it's there, we'll put him through his paces today and see how he does, then we can take it out in a day or two." Shortly after that, while the PT therapist was talking with me, John reached up and before she could stop him, pulled it half way out. After much flurrying around, Dr Knackle returned and removed it the rest of the way! Well they were warned! I learned from Pops last evening that they also removed his catheter. So many big steps Biggie! His OT therapist said she would take him to the computer room to view his blog, but I don't know if that happened yet. Won't he be surprised by all the stories and comments!

In discussing the discharge plans yesterday, generally we can expect a 4-8 week stay at Fanny Allen, then he'll need 24/7 companionship. But I think we'll have a better idea of what Biggie will need as time goes on. He continues to improve each day, at a typically Biggie pace.

Today he'll begin working with the speech therapist. Apparently he's suffering with Aphasia, common after a head injury, which causes him to not be able to speak, and weakness on the right side. But he can communicate on the phone to simple questions and replies with fairly simple responses. It's all so exciting though isn't it? I can hardly wait to return next Wednesday to see his progress.

Michael Brookes, editor at Concrete Wave is planning a story featuring Big John, using the blog, comments and related stories. He needs a good, high quality picture of Big John skatboarding for the article. Does anyone have one? If so, please send it to me, Lauren Shade @ LaurelwoodsOrganics@att.net. Please be sure to include your name, email addy, and a description of where and when the pic was taken. Thanks!
Bless

OUT IN THE FRESH AIR by pops

rerturned from 3 nights at home (highlights-- brer bear bear eating my big red hen and a mushroom foray into NH's biggest white cedaar swamp) to visit with biggie right after a wheelchair trek outside as his afternoon PT. He was non talking but fed himself with a fork ( I never had ny doubt he could master eating again.) He nodded to virtually all questions including weather or not I could fly. (I was stretching after my long trek and asked if I could fly and he agreed) I was asked to pick up some of his own clothes from his 'apartment" for PT/OT. I will observe all rehab sessions today and have his phone so call if you can and if time is right I put it to his ear.

Biggie J moves on to Rehab by biggs mama

Greetings from Fanny Allen Rehab center. Smiles to All! Biggie J was relocated this afternoon, and is settling in nicely. Each day he does something new and today was no different. Today I held his phone up to his ear when a friend called, and he started talking!!!! First time I've heard his voice. He still can't make the connection to talk to us in the room, but on the phone... you know him, that's second nature. He even hits the end button when he's done talking :-) That Guy!

He's moving his legs and trying hard to adjust himself in the bed. And today he crawled his right hand over to yank out the catheter... fantastic really... that arm is the slowest to recover, perhaps because that was the shoulder that hit the ground along with his head... I'm no doctor, but makes sense to me.

Also the speech therapist at Fletcher Allen passed him today to drink fluids and to eat. He had no trouble swallowing, but due to circumstances... he didn't have his trach tube removed today, but it's most likely on the schedule for tomorrow. In any case, he chose applesauce for his first food, followed by pudding. And he fed himself with his left hand. He was very stimulated today by all the excitement of the move and hardly slept. Finally once we were settled in his new room at Fanny Allen he dozed off... and me too. Later on he spoke to a few more people on the phone, and had a few visitors. He's really doing so very well.

Visitors at Fanny Allen are limited to two at a time, and can visit between 4 pm - 9pm. Sunday visitors are welcome from 10am - 9pm. He tires easily, so please use good judgement when you visit. If the nurses think he is tired or over stimulated they will ask you to leave. Tomorrow he'll have his initial evaluations and his PT/OT/Speech therapy program will be developed. He'll be working on his rehab during the morning and the afternoon, with rest periods. Once he's ready he'll take his meals in the dining room. I'll be there with him for his AM therapy, then have to head back to NJ. Hopefully I'll get in a few days of work before I return next week. Pops will be back tomorrow late afternoon.

John is really coming around. I won't even try to guess what he'll be able to do this time next week. Keep praying... it's working.
Bless

More Physical than Cognitive by biggs mama

Today was a big day for Biggie. He had his first shower in 38 days! His nurse Alice suggested it, and he seemed quite pleased by the prospect. She arranged for a waterproof gurney, somewhat similar to an outdoor lounge, but much higher. We rolled him into a shower room, and he really enjoyed the experience. Afterwards he napped.

He enjoyed his visitors today, mostly nodding to questions, but few if any attempts to verbally respond. Later this afternoon he spent about 1 1/2 hrs in the stryker chair, a very sophisticated appliance that converts from a gurney to a chair. He worked on adjusting his position, trying to use his legs to move his body around. He would drop his right foot off the footrest and then pick it back up! Earluer he was also able to lift his left leg back up onto the bed after slipping it over the side. After periods of exertion or stimulation, he tends to sleep. His breathing is very good, and I'm hopeful they will remove the trach tube tomorrow. I'm also hopeful that he will be transferred to Fanny Allen tomorrow as well.

I wanted to take a minute to thank each of you who respond with comments to the blog. It's really encouraging to read your comments, as it spurs me to continue writing. Thank you for your input and the many offers of assistance.

If this is baseball... It's the World Series by biggs mama

This afternoon as I was standing by Biggies bed in the private room he was moved to last evening, he reached his left arm around my shoulder and patted me! In a voice no louder than a whisper he replied "OK" when a friend said she would be back to see him again. I brought him a deck of cards (with a picture of a Zoey dog no less) and he enjoyed picking through them. He even put some in his right hand and delicately held them for a bit. That is the first time I saw him move his right fingers, and he held the cards! He had a lot of activity in his legs, and tried to use his left shoulder to adjust himself in the bed. And when I left this evening, he was fumbling with the tv remote, pushing the on/off and channel buttons, and the call nurse button too! WOW what a difference 4 days makes! If this is baseball... it must be the world series!

Dr Rughani stopped by this afternoon and said John was still scheduled to be moved to Fanny Allen Rehab center on Monday. I asked if the trach collar could be removed before he left Fletcher, and he said it's very possible that can be done Monday morning. He has a plug in the present trach tube that allows speech, but he still has some work to do to repair the brain/speech connections. He did mouth the word "yes" to me, without sound. I am so amazed at his progress today I just couldn't wait to share it with all of you who have tirelessly followed Big John's progress and held him in your prayers. Stay tuned.

READY FOR REHAB by pops

on morning visit found my son in a regular room with his nurse proclaiming him ready for rehab where they will work him like in boot camp. It is a great sign that john smiles and not frowns and nods and not shakes his head for some waking from a coma are hostile or even vicious to the ones they love most.

off home for 3 days for quality time with my cat and tend my garden, pops

inch by inch pops

john was pretty sleepy yesterday and heart rate flared before PT/OT so he missed daily sit up.

This morn, the night nurses reported J was awake most of night and reacting and smiling with them but stopped when neurosurgeons appeared. J sat up about 20 minutes in PT/OT working on balance and initiated pushing himself up when slumped to side. Top neurololgist came by and reacted with j a bit. He said s long as their is a connection they can build on it. Right now J is scheduled to be moved to Fanny Allen on monday where they will work him harder.

Again our family is overwhelmed by the love and support we have received. pops

Long Path Through the Woods by biggs mama

Back home in NJ for a few days of work and restoring inner balance. Thanks to all who've supported us through the great challenges we've faced these past 36 days. John has come a long way out of the woods, but this forest is huge, and the way difficult. His need for us is great as he faces the scary reality of requiring 24/7 care and prolonged help to regain mobility.

He needs the positive energy and support of his friends to buoy his spirits and encourage him through the hard months ahead. If you'd like to visit him, please call his cell phone, so we can help you coordinate your visit.

Big John's family is tremendously grateful to Erik and Ana for the donation of their home on Russell Street. It has been a haven of rest and serenity through these horrific days. We are now hoping to find some accomodation closer to Fanny Allen Rehab center for the next few months, as Pops loves to walk, but 5 miles is a bit too much for him. As John progresses through the rehab program, we'll have a better idea of what his needs will be through the winter. The doctors are predicting he'll still need 24/7 care, but we all know John, and so we'll continue to visualize him standing tall. We would appreciate any help in finding our next "rest stop" along the way.

Again, our deepest thanks to each and every one of you for the outpouring of love and support to Big John and his family. Blessings.

less biggie john by pops

spent 7 busy hours in room with John yesterday. in morn 2 aids weighed him ina sling like device and he has lost over 40 pounds in hospital. I can feel it moving and rubbing his arms and legs. J had 3rd rehab session siting him up in bed with feet on floor to regain balance and holding head. a few additions to previous sessions geting him to leanto side and push self up.
in late afternoon Dr Bintner (top nerosurgeon) stoped in and said the game has changed from the speed of ice hockey to baseball. She is pleased with his general level of alertness but concerned with little motion on right side. Just before 5 Dr Knacle who is in charge of admissions of fanny allen examinded John. He is not ready yet but perhaps next week when congestion wanes and trach is removed. He said stay at fanny allen could be "relatively fast" and we should start to plan for J's care afterward.

"Lee boy" said 430 paid admissions to benefit and event raised well over 5000 for fund. many thanks for a great party and your generosity and concern and love of John. i am sorry we have not been able to respond to the dozens of cards and donations but will when tihngs settle a bit. pops

PS I was last in my typing class for I kept my eyes open and last in my small arms training for I kept them closed. my latter instrutor told me to envision shooting ho chi min so I closed eyes figuring he was small and I would miss.

POPS BACK IN TOWN

what a difference a week makes!!! a week back we were excited when John moved his left arm a foot, yesterday he was doing his best to bite the O2 tube off his left index finger until the nurse moved it to his right hand more awareness, more movement everyday but J get tired an has to rest and there are plateaus ond one one long difficult row to hoe ahead.

many thanks from his family for all your support and see you at concert tonight. pops

Progress

John has made "tremendous progress" in the past few days, says Dr. Link (neurologist). John has been responsive when engaging with family and friends, seeming to understand much of what is said to him, and responding at times such as with a smile or moving his head. We've seen less improvement in physical actions vs. cognition, but John is improving those as well. He has moved his hand up to near his collarbone, has tightened his hands to hold objects (crystals), chewed on his fingernail (bad habits die hard!), moved his legs but not his toes. Today when John sat in a hospital chair (that supported his body weight), he was able to hold his head up for a time, before growing tired and letting it drop to the side.

The View from a Chair by biggs mama

After 30 days in bed, John enjoyed a few hours sitting in a chair in his room in the ICU this afternoon. He was quite interactive, and as Sky put it "It's great to see that John is still interested in two of his favorite things: women and snowboarding, and I didn't even say snowboarding, I just said Jay". Both topics brought smiles to Big John's face.

He is scheduled to be moved out of ICU (perhaps today) to what's termed a "step down" room. That's an intermediate step, from ICU to standard room. This room will be a 3-1 share with an assigned nurse.

The EEG did not reveal any seizure activity, so he was given ritilin (sp?) to stimulate brain activity. I guess he doesn't mind that! That's the breaking news of the moment. Thanks for your amazing support.

HOW CRASH-ME -BOY EARNED HIS NAME by pops

HOW CRASH-ME-BOY EARNED HIS NAME by pops

The last many years our occasional (average monthly) phone conversations have usually ended--

Easy does it, Crash.
Easy don't do it, Dad.
Easy does it, Crash.
Easy don't do it, Dad.
Easy does it, Crash.
Easy don't do it, Dad.

But the last 6 to 9 months

Easy does it, Crash.
Yup, easy does it, Dad.
Easy does it, Crash.
Yup, easy does it, Dad.

has prevailed.

His nickname was coined by my dear double cousin Russell, the proprietor of the family farm just outside Fitchburg Mass from 1970 to 2001 who in that period had over 200 employees and was a great student of human and animal nature and personal friend to all a we sheltered under the umbrella of his being. After me boys third significant "accident" in 3 years, Russell started calling him "Crash" and I routered a "Crash Hill" sign to mark the spot where he totaled my 69 Ford one ton van.

The first "accident" was June 1986 when under Russell's care on the farm while I was renovating an apartment in NYC, me boy caught his T shirt in the gear of the turning mechanism of a 1000 gallon milk tank. I rushed back in the night, met him in the hospital and was told he was walking by the tank and it grabbed him though it was on side of the tank against the wall and we all suspect he was enjoying a free back rub as the gears mixed the milk. The surgeon said he had the maximum possible damage without permanent disability.

The second "accident" occurred the next summer just above Lower Ausable Lake in the Adirondacks. We had just boated up a 3 mile lake and were beginning a portage to the next lake to join friends for a wilderness experience when me boy slipped and tore off a flap of skin below his knee. Boating back, busing out, and driving to Lake Placid took over 3 hours where the ER doctor told us it was the only place in the body that could be cut so much without bleeding to death in that time.

So-- summer 1988 me boy and I were living in a 14 by 20 foot one time convenience store that my cousin had bought ten years before and placed at the edge of a drumlin out behind the heifer barn. Skinny was the main occupant for years but facing time for his third DWI he climbed out a courthouse window and fled to a back water farm in Benson Vermont. I cleaned it up (2 dump truck loads including a roadkill cat named "flats") and made it my home away from home for years. Me boy slept on a mattress on the floor until one day we made a platform bed at a woodshop at my aunt's a mile down the highway.

Happy from our accomplishment I stopped in the parking lot of the ice cream stand perhaps 200 yards from the bunkhouse and told me boy he could drive the rest of the way. ( I started driving hay trucks on the farm at age 9, Russell at age 6) We crept up the drive, the van having a an automatic trans and a big V8 but turning left up a hill I said to step on the gas a little. Crash floored it and we headed straight for the tall silo. Picturing it toppling on us I reached toward the brake and and turned the wheel away only to hit the abutment of a trench silo. I sat in silence with Crash saying, "Dad, you are not saying anything---- Dad, you are not saying anything."

((note, the abutment pushed the radiator into the steering box, which would not necessarily total the vehicle but the box had already been welded and could not be done again.))

Ridin High in the Sonshine by biggs mama

Best day so far! Big John was alert and interactive today, with a few smiles, good eye tracking, some eyebrow raisings, lots of hand and arm movements, leg movements, and moving his head. He was awake most of the morning and afternoon. He had an EEG this afternoon and was alert throughout. The EEG is to determine if he's having any seizures (so far he hasn't), but once that's read, they can give him some medicine to stimulate the waking up process.

The speech therapist was in to see him and explained how she will work with the respiratory therapist to cap the trach collar and release the cuff inside around the trach tube so he can practice talking, once he's ready for that.

It's an incredible roller coaster ride, and today has been quite a high. I really felt Big John was connecting with me today. It's funny how a little purposeful raised eyebrow, or a wink back to his nurse can raise one's spirits exponentially. In fact, it was so great I stayed all day until he finally took a 4PM nap.

Mostly Cloudy This Morning by biggs mama

Thanks to Small Dog Electronics' donation of a power cord, the blog can continue!

Today John was removed from the ventilator and is now breathing on his own through a trach collar. It takes a lot of effort on his part to work the muscles involved in breathing, so he is really working hard at something we take for granted along with his huge task of healing his brain. But moving off the ventilator moves him one step closer to moving out of the ICU into a regular room. This morning he woke with some eye movement and some eye contact, but with no real responsiveness or alertness. I'm told this is normal, and although at moments like this it's excruciatingly difficult, I'm clinging to the vision of him well and healthy.

The question of where he goes beyond Fletcher Allen is as yet unknown. Levels of Recovery are often measured in rehabilitation programs with the use of the Rancho Los Amigos scale to assess cognitive functioning. Today John remains a Level II requiring total assistance, and his Level of Disability is vegatative. These scales will be used to determine the most appropriate rehabilitation facility available to him. We have some time before this decision has to be made, and our prayers are that his condition improves enough over the next week or two to become an appropriate candidate for the Fanny Allen Rehabilitation facility here in Burlington.

Two baby steps forward, one back, but in the right direction.
Bless

Have You Seen A Sunburst? by Biggs Mama

Have you ever seen a "sunburst"? When the layers of clouds part and for a brief moment you see the sun before the layers of clouds close up again. The Seattle area is famous for them. That's what I shared with John yesterday.

In between the long periods of "no contact" with John floating somewhere in the ozone are windows of clarity. In the late morning I felt him engage eye contact. After talking to him awhile I asked him if he was understanding me. "Blink if you are hearing me John" and there was a slight blink. "Ok, I thought that was a blink, but I can't be sure. If you are really understanding me close your eyes, like this", and I closed my eyes. And then he closed his eyes!

Later in the afternoon, when he returned from having a feeding tube inserted directly into his stomach, and was practicing breathing without ventilator assistance (building up his muscles so he can be removed from the vent) his nurse Shannon tapped on his third eye and the window opened again. The tv was on and he started watching Oprah interview Al Gore, he engaged eye contact with me, and he tracked Shannon as she talked and tended to his meds and such. He was present! It was exhilerating, and as I became more excited that he was clearly engaged in our talk of the origins of Ridin High, how he started it and such, I asked him "You're really getting this aren't you?" and then he smiled on the left side of his face! Another Sunburst! And then the clouds slowly closed back over him...

Traumatic brain injury is a long haul. But John is in there, and he is working hard to come back. Trust in prayer and keep sending your positive energy and images of Biggs fully back. It's all working.

Inhale

John is breathing mostly on his own now. Yesterday they switched the ventilator so that it would do one breath and then the next John would do himself. Today John is doing all breaths on his own with some extra support by the vent. It sounds like if all goes well he could be off the vent completely in a few days. He'll still be breathing through the tracheal tube though.

Dr. Gibbons from neurosurgery told us that the MRI showed that John did not have the "shearing" of axons that was a potential concern. It also confirmed the location and amount of damage that was seen in the CAT scan- in his left and right front temporal areas.

John's overall condition is improved as well. He no longer has a fever, the pneumonia is gone, they are reducing the level of pain medication, and he no longer is receiving higher than normal saline in his IV.

Waking up is hard to do

While we are getting occasional flashes of recognition from John, none as clear as Rachel's experience with him a couple mornings ago. Dr. Walsh told my dad that he is pleased with the progress- that John can move more every day- but said that waking up may take days, may take months.

The doctors ran a MRI yesterday (John is now stable enough to tolerate it). We've not gotten the full results from the radiologist yet, but Dr. Walsh said there was "nothing terrible".

We are very excited about the Benefit for Big John on August 13th and look forward to celebrating John with the great community of people that love him. The details:

Higher Ground (http://www.highergroundmusic.com/)
Monday, August 13, doors 8pm
$10- all money goes to John and his family
Turkey Boullion Mafia
Seth Yacovone
DJ A-Dog
DJ Nickel B of Itation Sound
Premier of Travis Card's New Skate Film
All ages
Video 8:30pm, Music 9:15-2am
Tickets at the door, at Riding High, or at the Higher Ground website

near riot this morn by pops

the hospital cafe opened 3 minutes late this morn with a crowd of about 20 angry coffee addicts pounding on door and shaking their fists. when the melee abated I got my cup and drank it in the ICU with me boy watching a spectacular peach-pink-purple dawn in the NE sky.

the night nurse said he had had a quiet night. Second in command nerosurgeon DR. Walsh examined J at 6:40 and was pleased with his increased reaction to pain; at one point J moved his right hand about a foot. I did not notice any change from yesterday in tracking with his eyes but they are bright and alert.

good afternoon by pops

a minor technical point---the green field filter is in the main vein from lower body to heart. the longer one is in bed the greater the chance of a blood clot. it can be more easily dealt with in the filter than heart.

the second neurosurgeon Dr Walsh said he was pleased with the brightness of eyes and they're following voice. In my afternoon visit J seemed about as he was this morn. I visit every morning from 5 to 7 or so and only one morning have I not seen the neurosurgeon team on their morning rounds. Their plan of the day almost always is wait wait wait.

Friday JESSE LEE out front on valet parking reminded me it was a marathon not a sprint. Her brother took 2 full weeks from opening eyes to talking. we are encouraged and thank everyone for their support.

Lighter

Last night's nurse described John as lighter. When I was there, his eyes were moving quite a bit more than the night before and he seemed to look toward me a couple times. The nurse said that when she would leave him alone at night for a while, he'd close his eyes, but then open then again when someone entered the room. At times his hands respond to stimuli but there was less change with that so far.

When Rachel went by later this morning, she had some significant responses from him. When she called his name from either side of the bed, he would look toward her. When she asked him if he knew she was there, he nodded his head yes. When she asked him if he was coming back to us, he again nodded his head yes.

One Inch Away

The weaning actually went much faster than we had understood and John has been off the pentabarbitol since yesterday morning. The effects should take another day or two to wear off, but already we are seeing signs of John coming back to us.

My dad described him as one inch closer, but to look at him now he seems just one inch away. His eyes are now open. He's not quite there yet, but it seems like he's not too far away. He's making some small motions with his hands, including in response to pain. He's making some small movements with his mouth, seemingly in reaction to the feeling of having the tubes in his mouth.

The doctors are planning a couple procedures for later today. The first is to protect him from blood clots going to his heart. They'll be inserting a filter in the main artery return. They are also inserting a feeding tube directly in to his stomach, removing the one that currently goes in through his mouth. The mouth tube can irritate the throat after a prolonged period.

Weaning

John continues to be stable, with last night particularly quiet and steady. The doctors have decided to start weaning John off the pentabarbitol (the sedative he's currently on). They say the process will take 2-3 weeks as they slowly reduce the drug a few ccs at a time.

I just finished weaning my little boy Leo with a not too dissimilar process and time frame. I'm happy to say he adapted well, with the great side benefit that he's now a bit more interested in cuddling. Let's hope for a similar positive outcome for John.