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.

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.


John said...

Wow. A lot to swallow. This all feels surreal. Thank you, Rebecca, for the details.

John, get better. We're waiting for you. We'll wait as long as it takes...

John and Carmen

purplejenn said...

Thank you Rebecca and family for posting these updates. It is so kind of you to take your time to keep John's friends informed of the current status, and we all appreciate it very much. My heart goes out to your whole family as we all wait for John to recover.
Much love and peace - jenn, geoff & capn

jewel. said...

Ditto to all the thanks for YOU Rebecca and family - for keeping far-away family and friends posted on how 'Crash' is doing. Amazing summary of the meeting with his doctors. Please know that I'm sending lots of prayers to John and each one of you for each passing moment of healing.
Love and hope always,

Augie said...

Thank you so much for keeping us informed and sharing all of these details with us. It's so nice to get the unfiltered truth direct from the source. I know this is hard for you all and I hope you feel the many blessings of love pouring out from the hearts of all John's friends. He truly is a strong being, and a man of inspiration to many.

nash said...

took a long time for the news of biggie's accident to hit california, but it hits hard. seven years ago john held my hand as i lay in the icu at fletcher allen unconscious with a serious concussion from skating. he says i nearly beoke his fingers i was squeezing so hard when they stitched my skull to stop the bleeding. wish i could be there right now to hold your hand my old amigo. love you my brother-Nash

John said...

So, tonight at the Eek-a-Mouse concert:

Eek-a-Mouse singing: Big John, Big John
Crowd repeating: Big John, Big John

Eek-a-Mouse singing: Get well soon, Get well soon
Crowd repeating: Get well soon, Get well soon

Eek-a-Mouse singing: God loves you, God loves you
Crowd repeating: God loves you, God loves you

It was amazing. Everyone there seemed to know Big John or know of him. And everyone was sending you their vibes...

Biggs Mama said...

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