Monday, July 30, 2007

Baby steps

John continues to be stable, supported by various interventions, and the doctors are in the process of weaning him off those. His care by the nurses and doctors is intense- with many adjustments hour to hour- but the overall progression is towards improvement.
-ICPs: They got him off the drain a couple days ago and now have reduced the level of saline in his IV. His ICPs are in the safe zone most of the time, and the frequency and duration of spikes have decreased.
-Fever: They are no longer regulating his temperature through the hot and cold blankets but instead keeping the room very cold and giving him Tylenol. He continues to run a slight fever, but at a level that is not dangerous to him.
-Infection: Since removing the drain, they don't have a easy way to test for the presence of the ecoli infection, but the infectious disease doctor believes that it should be cleared up by now given the antibiotic course John has had.

The infectious disease doctor, Dr. Grace, said to my mom today "you've got a painful walk to go but we'll walk it with you". Keep taking those baby steps, little brother.

Sunday, July 29, 2007

Some improvement

John's recent CAT scan showed resolving contusions and larger ventricles in the area of injury. Or more simply, his brain swelling is reduced. Makes me smile.

Call for Volunteers by Biggs Mama

"When the student is ready the teacher will appear" was again the case for me Saturday night when I attended the 23rd Native American Gathering of Elders at Sunray Peace Camp in Lincoln, VT. From the many out stepped the ones I needed at this moment in our journey to support John's recovery. My first contact taught me a water ceremony and directed me to the second, a firekeeper who was collecting requests for special prayers, to whom I gave John's name. He then directed me across the fire to Jim Vyhnak, a traumatic brain injury survivor and past Executive Director of The Brain Injury Association of Vermont, also a firekeeper in the Green Mountain Band of the Cherokees. In three steps I had succeeded in connecting with and gathering abundant strength and resources to assist John on his path to recovery.

When Biggie wakes up, we will have a clearer view of the path he will need to travel to return to his life. He will need all of us to help reconnect him, in the least, to these lost weeks and possibly to help him relearn everything. In these days of waiting for John to wake up, we can coordinate ourselves into a strong support network. Thanks to Erik, Ana, John and Carmen we have a base from which to organize our resources at 32 Russell Street. Starting with the Brain Injury Association of VT (biavt.org) and the Brain Injury Association of America we can educate ourselves about traumatic brain injury (TBI). You may have stories of loved ones and friends who have suffered and survived TBI to share. If you would like to volunteer your time, talents and energy to Biggie's support network, please add your name here in a comment. If you would like to be a volunteer coordinator, please indicate that as well. As Biggie's support crew develops, we will work out contact details, phone trees, and the many unknown requirements of his recovery.

Doctor Commichau, the attending neurologist said when asked his prognosis on John " Based on his initial responses early on we are optomistic for a positive outcome". That is as good as we can get at this point, but I'll take it with a smile and a whoppee!! If we are overprepared and the volunteer crew isn't needed... then we'll just party hearty with Biggie!

Stiyu (stay strong),
Biggie's Family

Saturday, July 28, 2007

Thanks and Gratitude by Biggs Mama

Thanks John for sharing the chant from the concert last night. Tears flow so easy these days... and reading how much people love my son John helps alot. I woke thinking I wanted to put up a post thanking you all for your prayers and the powerful energy you are sending to John and our family. We are deeply touched by the outpouring of love from all over the map.

We have a long road ahead... just how long is anyone's guess, and Biggie is not talking yet. We need to reach out to one another, hold tight and be strong and courageous. Biggie is fighting the fight of his life, for his life.

I've sat with my boy for hours on end, stood holding his hand and singing the Cherokee Morning Song to him and visualizing him opening his eyes and asking "Wat's up Bigg Mama?" As I gaze upon his face I see him at all ages throughout his life. The minute old newborn grey as clay waiting for his first breath. I see him a tiny tow head toddler we called Kissie then (his oldest sister affectionately coined the name from Chrissie as he was called in his youngest days). I see the fearless 4 year old pushing his big wheel far up Dictionary Hill in Spring Valley, CA then with feet extended, flying down that hill to be caught by a fearful mama and spun into a heap together. Ah, there is so much I can say... so many stories of this bighearted boy grown to manhood. Stories of the many adventures to the emergency room as Biggie climbed to the edge where he lives his life. Of the countless stories shared about his friends and his adventures, his hopes, his fears, his goals, his dreams. I see these and more on his peaceful face as he lies in the ICU on life support while his body struggles to heal. And I give thanks as I do each day that Big John lives and breathes.

We keep this blog, the letters, the cards, the pictures in large part because he will want to know all about these days. He will need our collected stories to fill in these lost days. Your prayers and poems and friendship will be the foundation that supports him through his journey to recovery. As we say in Cherokee "stiyu" stay strong! Hold tight to your vision of him well and strong.

wado, wado, wado... great thanks and gratitude
Biggs Mama

DAWN by pops

FIRST DAWN

First dawn in sixteen
I have not been with my son
in ICU Fletcher Allen
Burlington, Vermont.
Yesterday neurosurgeon Walsh
noting that said for me to
take a break and get some sleep.
Home, I still rise at 3.

Everyday, waves of hope and despair.
Everyday, tears of pain
and love we never knew existed.

van 7/28/07

Friday, July 27, 2007

Big Meeting

My sister Rachel felt it was time for a meeting with John's doctors, and with the help of the social worker on our case, made it happen. Dr. Binter, the attending neurosurgeon, and Dr. Commichau, the attending neurologist, spent over an hour with my family discussing John's current state and outlook.

Summary of current state:
-John's condition as still very critical. He has a closed head injury in which the impact of the fall resulted in brain contusions
-He is currently stable and doing well on the current drug regimen and other interventions. There is significant variabilitiy in his ICPs minute to minute and hour to hour but with a progression toward stable.
-He is suffering from a second round of infection of ecoli pneumonia in the lungs. It has not reached his brain or spinal fluid. John arrived at the hospital with lungs in poor condition (some of you may have noticed a bad chronic cough beforehand). The alvoili in his lungs had collapsed and were not functioning properly (likely due to smoking). Infection goes to the weakest point, which for John is his lungs. The doctors and nurses have tried multiple times to clean the lungs including a bronchial clean, but with only partial success.
-The EKG has shown no heart issues.

Outstanding risks:
The doctors cited several risks that could effect John's stable condition.
-A blood clot could form from him lying in bed for a prolonged period of time. If it were to form, it could cause an embolism. This can often be addressed surgically.
-He could suffer from additional infections or the existing infection could worsen.

Extent of brain injury:
-The CAT scans show some damage to 2 areas of his brain, the side with the initial impact and the side opposite the impact. The CAT scans have stayed the same over the past 2 weeks. CAT scans can show injury but not predict the effect of that injury on brain functioning.
-The EEG measures brain waves. The brain waves were slow (as would be expected for someone in a compromised state), but showed no sign of seizures (misfiring brain cells).
-The kind of injury that John had can cause twisting of the brain and "sheering" of axons (neuron wires disconnecting)which can result in major deficits in functionality. This type of damage can be assessed with a MRI but John cannot currently tolerate a MRI as he would have to leave the ICU (not safe for someone in his critical condition)and lie flat for 40 minutes (which would likely raise his ICPs too much).
-Even with all of these tests, we will only know the extent of brain damage when John wakes up.

Outlook:
The doctors discussed how dealing with brain trauma is an art to which a lot of science is applied and that the specialty has really come about in the past 10 years. Thus, while much is known, even more is not known. Before coming to the meeting with us, Dr. Binter told the neurosurgeon residents that she was going to tell us 3 things- "I do not know, I do not know, and I do not know". What she and Dr. Commichau were willing to say about his outlook for the future was:
-A full course ICP program is usually 2-3 weeks. John is at 2 weeks and appears to be at the tail end of the pressure problems if status quo is maintained. They will try step by step to reduce interventions, going to the next step as each is tolerated. The next step was planned to be to change the height of the bag connected to the brain in his head (more on what actually happened later). Raising the height of the bag would cause the drain to go from constantly working to working only when his ICPs spiked.
-We should expect a long recovery but impossible to predict the timing. It would likely involve intensive inpatient rehab followed by outpatient rehab.
Many, many thanks to the doctors for taking the time to discuss John's condition in such great detail.

Update since the meeting:
Now, as for the drain, the plan to move slowly toward removal starting first with changing the height of the bag was changed last night. The drain stopped draining, which apparently can happen after extended use. The neurosurgeon on duty attempted to unclog the drain. When that failed he tried to insert a new drain. After working on him for 2 hours, he was not able to do either. The inability to put in a new drain was due to the extent of the swelling in the brain. After 2 hours, the neurosurgeon team decided to instead remove the clogged drain, put the pressure monitor back in his head, and manage his pressures medically. His pressures had been high during the surgery and hours following, but came back down with saline and have stayed at a safe level since then. So, we ended up with an accelerated path to drain removal that hopefully John will continue to be able to tolerate.

Wednesday, July 25, 2007

Settling in

The doctors made some adjustments to John's medicines that are better suited to use on over longer period of time without severe side-effects. He had been on Vec (a paralytic) and Propofol (a sedative), and is now on phenobarbital. There is no longer much talk about reducing sedation and doing further tests of consciousness until he has been stable for a longer time period. The medical team has been giving us this and other signals that we should settle in for what is likely to be an extended stay in the ICU.

As we make logistical arrangements to do so, our sincerest thanks to Erik and Ana who have been kind enough to lend my family use of a house they own just two blocks from the hospital, and to John Stafford who set us up there. We have also started getting many wonderful cards at the house and appreciate all the good wishes coming our way.

Some of you may have noticed a comment posted anonymously today regarding the safety of longboarding. This site is a place where those who love and care about John can stay abreast of his recovery and send good wishes his way. Anonymous- as your comment was neither, I ask that you respect my wishes and those of my family and refrain from further comment on this blog.

Tuesday, July 24, 2007

The boy next door

The last day was John's best yet. ICPs stayed below 15. His oxygen levels are improving and lungs look a bit better. His ability to regulate his temperature is slightly better. The doctors are doing another CAT scan later today and we'll see what comes next. So, I guess we are in the waiting period as John's body rests and recovers.

The good news in the hospital today is that Patrick, the skater who was injured about a week before John was, has been moved from the ICU (Patrick's room was just next to John's) to a regular hopsital room. Congrats, Patrick! Hopefully John will be following you soon.

Monday, July 23, 2007

BIG JOHN'S BIRTHING by pops

((Sorry to delay the story of how Crash Me Boy earned his name, but I will give a hint: it came after he totaled his first vehicle at age 10. It is the most sensible to start at the beginning.))

John Christian Van Hazinga was born in a WWII vintage bungalow at 3742 Menlo in East San Diego on October 17, 1977. Home delivery doctors were harder to come by in SAN DIEGO than in rural southern NH where his mother and I met up and his 2 sisters were delivered by an old country doctor. Dr Brown preffered to deliver babies at home and said in his thousands of home deliveries only two required going to the hospital and they were not emergencies.

Anyway the 2 home delivery doctors in San Diego were Dr Repair and Dr Butcher. We chose Dr.Repair. Twice the afternoon before John's birth his mother had contractions and Dr Repair came by but they subsided. When they resumed in the night Dr Repair was slow to come by and I delivered me boy. There was not much to it for he came speeding out and we were joyous.
Dr Repair later refunded $150 for missing the delivery. The easiest buckos I ever made!

Quiet nights

Quiet nights of quiet stars quiet chords from my guitar
floating on the silence that surrounds us.
Quiet thoughts and quiet dreams quiet walks by quiet streams
and a window that looks out on the mountains and the sea, oh how lovely
(Thanks Sinatra)

Another quiet day and night for John. And a quiet early morning walk to the hospital for my dad, in contrast he says, to the wee hours on Saturday and Sunday when the Burlington streets were full of revelers (his term).

His ICPs are doing well- down as low as 6, with occasional flare-ups, but then settling down again soon after. They continue to keep him as quiet as possible, with heavy levels of sedation.

The only new concern of note is that they did an xray of John's lungs and described them as "terrible". The nurse said it's typical to have lung problems when being on a ventilator for a long time, and we likely all assume that John's lungs were far from pristine going in. They put in a larger trach tube and will continue to monitor his breathing carefully.

Sunday, July 22, 2007

First time in a decade

John had another stable night with minor pressure flareups but those were dealt with relatively fast. They are aiming to keep him steady and "grogged out" (my dad's term) for a few days so he can heal and then they'll start reducing the sedative. As the can, they'll be reducing the interventions they've had him on- for example last night they've turned off the blood transfusion. They are still using others like the cold and warming blankets to regulate tempertature, and positioning his upper body and saline solutions to manage the ICPs.

My dad saw Dr Link this morning and the doc said John was "steady as she goes" and "he is behaving". "If so", my dad says, "it is first time in a decade". My dad is working on a story about how John earned his nickname Crash, so stay tuned for that. And let's just say, as we all know, they don't call him Crash for nothing.

Also, to clear up any confusion about my dad, his name is John Van Hazinga (middle name Peter; my brother's middle name is Christian). My dad goes by the nickname Van. I'm not quite sure how the Burlington Free Press came up with Dan Van Hazinga, but perhaps it went something like this:
Editor- "what did you say the father's name was?"
Writer- "John"
Editor- "that's the son's name"
Writer- "maybe it was Van"
Editor- "Van Van Hazinga!?!?! Let's just call him Dan"

Saturday, July 21, 2007

Stable

John had the best day and night yet since he was admitted to the hospital! His ICPs are below 20 and stable, and hopefully will stay that way. The doctors may reduce the sedation and check his level of consciousness later today.

I'd also like to take a minute to recognize the amazing efforts of the doctors and nurses and Fletcher Allen. We have all been blown away by how caring and attentive the nurses have been, taking the time to explain things to us, and keeping a close eye on John's stats and doing everything they can to make him comfortable. We also feel very lucky to have such a highly qualified team of doctors with 4-5 neurosurgeons plus another 15 or so from other specialties.

Friday, July 20, 2007

Morning Report

My dad is an earlier riser, and likes to get over to the ICU at 4 or 5am, returning a couple hours later with the morning report (my mom likes to camp out there for most of the day after a more typical wake-up time). John had a quiet night, with low ICPs and stable blood pressure, after a tumultuous evening. Around 5pm, his ICPs and blood pressure shot up and were erratic. After the standard non-surgical procedures failed to bring down his pressure, the neurosurgery team decided to insert a second drain in to his head. They attempted it 3 times; none successful. Not sure of the issue, but according to the nurse it's not unheard of to not be able to get it in. Then, for reasons unknown, his pressure dropped and stabilized, staying there for the night.

The Burlington Free Press has their own morning report today on John. Check it out at:
http://www.burlingtonfreepress.com/apps/pbcs.dll/article?AID=/20070720/NEWS02/707200306/1007

Thursday, July 19, 2007

Riding high, lying low

My aunt, Sylvia Howe, said how John was doing what he loved (When I saw my dad in the ICU waiting room he said it was the day he'd been expecting almost all of John's life).

Check out John in a video of Thrashing Thursday:
http://www.sevendaysvt.com/features/2007/one-helluva-ride.html#54491
While I am tremendously saddened about his current situation and the scenarios for the future, John has always lived life to the fullest, and it's nice to see him in his element instead of lying in the hospital bed full of tubes.

Also, check out his MySpace where lots of friends have posted good wishes for John:
http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendid=98477278&MyToken=86f25853-c2c6-40c8-b309-dd9abd1b2c0f

Every day has it's ups and downs

-My dad said seeing him this morning, he looked so much better, not because any real change in his condition but because they've removed the pressure gauge from his head. They are trying to reduce possible sources of infection and are now measuring the ICPs through the drain in his head.

-After a course of antibiotics, they found no infection in his brain. The fever persists, which is being held in check with the cooking blanket and a warming blanket. The cooling blanket circulates cold water to keep his core temperature down. The warming blanket blows warm air on his skin to keep his body from shivering. As the fever does not appear to be caused by infection, the doctors say it could be caused by damage to his' brain's regulation of temperature.

-The EEG still needs to be analyzed, but the preliminary look was okay and they did not see any evidence of seizures.

-John had a "significant event" last night, meaning a spike in ICPs that they had a hard time getting down. They took him for a CAT scan after the event and didn't find any change vs. the previous scans.

-My dad thinks he's seen at least 30 doctors checking on John. We are very grateful that he's at such a great hospital. For the first time today, a rehab doctor appeared. While we haven't gotten much info on what outcomes we can expect for John, the fact that a rehab doctor is coming by seems like a positive sign that there will be life post ICU.

-Just got a text from my mom (so details unclear at this time) that they are going to put in a tracheal tube instead of the breathing tube through his mouth as they are starting to plan for a time frame of a month or more.

From the "hamburgered" term (so shocking; I believe purposely so) to time frames extending from a few days then weeks then a month or more, the message is becoming clear that the damage is very severe and his recovery very uncertain. We appreciate all the good wishes and help from family and friends coming in every day. A friend of John's is even giving my family use of a house 2 blocks from the hospital.

We've heard that John's friends are planning a candlelight vigil tonight at 7pm, walking from Riding High (his skateboard shop) to the hospital. If you are in Burlington, please join in. It would mean a lot to my parents who are spending countless hours in the ICU.

Wednesday, July 18, 2007

Data vs. perspectives

A few developments today, but hard to sort out the data from the perspectives. The head neurosurgeon said John's brain was "hamburgered", that his recovery would be long and difficult, that you can't make a call on the damage until days of data are in. But, I didn't hear what data she was using to form this perspective, only the baffling and disturbing term.

We also had quite a few disturbing perspectives from his nurse over the past several days- "we almost lost him", "he may have pneumonia", "his left eye not tracking could be a sign of excessive brain pressure that the monitor is not picking up". I can't say I'm disappointed that she's off duty for the next couple days.

One person I am very happy is on duty is John's friend Jesse Lee. Her perspective, "you can't rush a coma" was hard won through watching her brother come out of a coma after 3 weeks. Jesse works as a valet at the hospital and my family and I always are happy to see her as we come or go.

I hope to have more data tomorrow, but for now, what I can report is:
-He had the EEG. During the EEG test, they reduced his sedation level again and got further movement of limbs and head. In addition to the initial EEG test, they've set it up to track him for 24 hours. No interpretation of any EEG results yet.
--They are monitoring for potential seizures.
-His fever remains an issue. He may have had an infection in his upper respiratory system that was pushed in to his lower respiratory system during the fall. They took the cooling blanket off earlier today but put it back on as his temperature rose again.


-

Tests of consciousness

John was stable last night, as has tended to be his night time pattern, with the rising ICPs coming during the day. The doctors repositioned him for better drainage of his head, and gave him a super dose of saline, which brought his ICPs down. They were in the 15-20 range overnight. His fever is also down. They have put cooling pads around his body which circulate cold water. The doctors are not yet sure whether the fever is due to infection or the effect of the brain injury.

Since John was admitted to the hospital, the doctors have performed repeated tests of consciousness or coma depending on your view of the fullness/emptiness of the glass. They measure abilities of visions, speech, and movement. They reduced the level of sedation and tried to get John to do thinks like open his eyes and move his limbs on request or in response to pain. The test is somewhat subjective and affected by the amount of sedative in his system.

Today's test was encouraging- he moved both of his hands, turned his head away from pain, and tried to open his eyes (showing a fluttering, but not getting them open). His past tests have been both better (he opened his eyes and moved all limbs) and worst (no movement at all) than this one. As the previous one was his worst, today's was good news to us.

He has an EEG scheduled for later today, which will measure the amount and location of brain activity.

Tuesday, July 17, 2007

Rider down

I'm John Van Hazinga's oldest sister, Rebecca. As you likely know, John was seriously injured in a skateboarding accident on Thursday. My family and I appreciate the good wishes from the many people who've let us know how much they care about John and are hoping to see him back on his feet again. I'm no blogger, but decided to start posting the news of John's progress.

For background on the accident, check out the Burlington Free Press. http://www.burlingtonfreepress.com/apps/pbcs.dll/article?AID=/20070714/NEWS02/707140306/1007.

Today, 5 days after the incident, John is still in the ICU and is in a coma.

Background: The key danger over the past several days has been the inter cranial pressure (ICP) as his brain swells. His ICPs are being measured by a device inserted in his skull. Over the weekend, the ICPs were managed by giving him a saline solution intravenously. Yesterday the swelling increased such that saline could no longer keep his ICPs in a safe range and a drain was put in his head. This temporarily improved his ICPs.

Today: It has been a tough day. His ICPs are again increasing, above safe levels (safe is 20; John has been above 25 for much of the afternoon and evening). If the ICPs cannot be brought down, a section of John's skull will be removed to relieve the pressure. He has also developed a high fever (38.8 Celsius), which could be indicative of an infection.

Prognosis: Initial and follow-on CAT scans show damage to 2 areas of his brain. The effect of this damage is currently unknown. Most people with this level of brain injury do regain consciousness and physical abilities. Many suffer some permanent mental damage, although in some cases noticed only by the person themselves. The effects of brain injury vary significantly from one person to the next and it is hard to say what the outcome for John will be.