Tuesday, July 14, 2009

Yesterday, after 8 weeks of speculating and hoping that Chris would soon be moving on to the new stae of the art Rehab Centre near my residence, We all received a heartbreaking evaluation.

Last night we were told by a Neurologist with 26 years of experience that,

"Chris is unable to make decisions without assistance and guidance and his memory is significantly impaired to the point where he might never be able to live alone."

"Chris requires supervised 24 hour care. The doctor claimed that the MRIs, CTs, and Angio scans show that multiple strokes have damaged numerous areas of the brain which (they tell us) cannot heal."

"This part of the brain manages insight, judgement, reality and memory."

The Doctor is therefore recommending that Chris be transferred to a different facility, which offers long term care and treatment for patients with similar significant brain trauma/stroke injury.
I should add that the Doctor asked Chris "to prove her wrong".

Thank Goodness his sister was with him when he heard this. As you can imagine Chris was devastated. He knows/understands what is going on but I can't tell you if or how much of the enormity of it all registers. According to his sister he was understandably overwhelmed.

I went to see him this morning. I was hoping that we can somehow make something positive out of the fact that he will be getting out of the hospital.

This is depressing, terrible, news but we still need to spin it into something good for Chris to build upon. Chris needs to feel like he is getting ahead and moving forward. I have no doubt that Neurologists are accustomed to being proven wrong on a routine basis...we are talking about the human brain, and if anybody can prove them wrong it will be Chris.

Yesterday morning I was at the hospital (partly to check up on his Mom who is his vigilant guardian angel) and along with one of his sisters, we actually saw Chris standing with his physio! I remember thinking how fantastic it was to see Chris standing up.

This morning I stole him from his Mom and made her take a break. Then I brought him outside..I wanted to see how much of the situation had registered. Once we were alone he asked me to find a way to help him escape. Unfortunately Chris is still convinced that there is a conspiracy to keep him imprisoned.

He is also having some problems with the short term memory loss...which may be a small blessing in disguise because I could distract him by taking him on a half hour stroll of the labyrinth in the hospital. We eventually went back to his ward where he shaved (mostly by himself with an electric razor) and as the Orderly finished the hard to get spots, we joked about keeping a moustache..Chris seemed at ease. For a time I sat with him in front of the bustling Nursing Station and he appeared to be miles away and untroubled by his recent news..
I was afraid to talk and risk breaking his state of temporary tranquility.

Now I am still processing all of this..I want Chris to prove them wrong.. I know that it has only been eight weeks and at the same time it has been over eight weeks!! I suppose I had convinced myself that I wouldn't notice any real change for months as the brain healed? The fact that an experienced medical practioner made such a devastating evaluation of his future quality of life has me puzzled. I had lowered the bar far enough to make allowances for more time so I'm out of sorts now.

This opened up a whole new set of questions and obstacles. We're waiting for more answers. Either way whenever I visit I still need to be as positive as possible and if Chris moves anywhere he will think that he IS making progress right? It will take a while for this to sink in...and my faint hope clause is still in working condition. Maybe that's naive wishful thinking but this isn't over until Chris decides it is...and I am certainly not going to give him a reason to stop trying.

I can't tell by looking at this photo whether it is a Sunrise or a Sunset?
Prove them wrong Chris..go ahead...prove them wrong.


Leni Qinan said...

Medicine might heal him, but it's not always an exact science. I sincerely hope he proves her wrong.

savannah said...

keeping positive thoughts, sugar. xoxo

Anonymous said...

"...moves anywhere, he will think he's making progress..."
That's pretty much it, in layman's terms, Donn.
If the Rehab place was considered "fast track" with high percentage outcome, wherever Chris moves to might be thought of as maintenance training; something his sports background could probably understand.
Yes, this a slap in the face, but I aint heard the ref's whistle.Neither has Chris.
Big hugs

eroswings said...

I believe he has made incredible progress, and he still can make significant improvements. And the neurologist did offer some hope.

Can he get a second opinion?

I have faith that he will recover. It may take time, but look how far he's come from being in a coma? He can do amazing things. Sure, this may seem like a set back, but I think he's survived so many other set backs. This may be just a small rest on his journey to recovery.

Debra said...

Life is rarely what we expect. And no one knows the future, its always at best a guess. So surprise everyone Chris. Follow your path to where it leads you and enjoy whatever beauty you can along the way.

I wish you strength and patience, Donn. I know you'll be there to share Chris' triumphs as well as support him during the difficult times. Your friendship is a wonderful thing to behold. You strenghthen my belief in the goodness of people. Thank you for taking the time to share the updates and please know you remain in our thoughts.

Ellen said...

Yes, prove them wrong! In my family about 75% of big negative medical predications were proven wrong. And the brain is the least understood organ in our body. He's young, he's strong, there certainly IS hope.

You're truly a remarkable friend Donn, this blog is a moving testament to that. Sending strength and comfort to both of you.

anna said...

I don't know what to say. This news is shocking. I found myself with tears streaming down my face as I read through this most recent update. I'm having trouble processing it - I can't imagine how you or his loved ones out there must feel... or how Chris must feel. Although knowing he wants to escape gives me a pretty indication of how he feels.

I'm glad that the doctor is open to the possibility of being proven wrong. I hope Chris takes her up on that offer.

Inside our hands, outside our hearts said...

Like Anna, I am in tears. I do not know which way to go, but if anyone can prove them wrong I KNOW Chris can.
I don't know if Chris gets these but if he does, this is for him.

You are a strong beautiful man and we ... I have faith in your strength and in who you are. Fight, fight as hard as I know you can, for as long as you are, nothing can hold you back. You are so deeply loved in many ways, know this, breathe it in and be beautiful. Hear what the doctors are saying and then push it aside and show them that there are still things that they don't know.

Donn, I can't say enough how much you mean to all of us who wait on the edge of our seats for news of Chris. Knowing Chris, I am sure he too is in awe of your friendship and dedication. This may be a setback or maybe it is something else to give him even more reason to fight harder. He has this obviously wonderful family and his extended family in you and yours that alone is enough to make anyone reach into the depths. Rest easy Donn you are important to all of us as well.

Pleased send my prayers and softest love,

angel said...

Oh Donn... that is dreadful news indeed.
I hope and pray that Chris will somehow be able to find a way to prove the experts wrong.
Give him a big hug from me.

Sienna said...

"It will take a while for this to sink in...and my faint hope clause is still in working condition. Maybe that's naive wishful thinking but this isn't over until Chris decides it is...and I am certainly not going to give him a reason to stop trying."

That is a more than fair call Donn.It isn't over, hope is still very much alive and kicking.

We were told: 1.to seriously consider removing life support, our girl was too severly brain damaged.

2. We did not turn off life support, and she slowly, so slowly clambered her way back, half her side paralysed as well as those areas you just described about Chris. Plus she was very emotional, quick to cry, anger, confuse, tire, couldn't remember 10 mins ago..people..

They changed our rehab place from the shorter more "better known-intense" rehab to a longer stay rehab place. Full of sad, forgotten folk, no family/friend support, she was wheeled in on a trolley, couldn't even control her balance, bowels, bladder, unable to feed herself/speak more than a name of a song...you know what I'm talking about.

It took months and months. the physio and other rehab staff still put in, (a little urging and hanging over the shoulder from us :) ). They worked with her and she put in 100%...people are so amazing, I just know Chris is a guy that commits and gives it his best, I am amazed and delighted he is doing some stuff already, talking, interacting, he is young, he has so much love and support from all of you.

EVERY neuro specialist told us we were left with something a bit better than vegetable, BAR ONE neuro, he kept saying don't give up, I have seen people come back from such widespread and severe brain damage and lead useful, happy lives.

She now holds a fulltime job, she makes lots of notes for her shortterm memory deficit, she drives (well!) a car. You can still notice minor things, her IQ (if u want some measures) is from 128 to 89, but it IS HER! she just faces some different challenges.

The essence of her personality is still there. She has walked back onto the Intesive care/Neuro unit to shake the hands and thank the staff, some of the staff were people that recc'd turn off life support, she was unretrievable...she gave those people her strongest/firmest handshake and biggest smile.

Don't let them shred your hope Donn. Nor Chris's. You are spot on with support and positive feedbacks for him. What will be will be at the end of Chris's journey, as you have just said.

But like any other head injuries person he does have challenges and work ahead, and so much hope.

People have this ability to rewire still, the brain finds, strengthens, develops other means to cope...You do need to know hope is still good, every minor little steps and gains are/is a goal for Chris. Toward as much independence as possible.

Norman Doidge: The Brain That Changes Itself. A Canadian.

Love and hugs and support and prayers from everyone here.

zIggI said...

Doctor's are programmed not to give false hope so they always present the worse case scenario. It's only based on stats after all. We know he can prove them wrong - I have every faith; after all, like most men 75% of the brain is water and only 1% of the rest is ever used, a spare bit will take over, never fear.

Gaby said...

I can only imagine how hard it must have been to sit down and write all of this out. As everyone has said, thank you Donn for keeping us informed. Never give up hope, brain injury is not a simple black and white matter...as many of the comments here have said. I look forward to hearing Chris prove the doctor wrong. Hugs to you both.

Laurie said...

It may take time, but I truly believe that Chris will come back from this.

Just a few days before he had his first stroke, he recommended a book to me, which I have since read. It's called "My Stroke of Insight", by Jill Bolte Taylor, Ph.D.

It's the story of a brain scientist's personal journey to recover from a massive stroke. It took her 8 years, but she recovered.

I truly, honestly believe that Chris will prove his doctor wrong. He has all the tools necessary...the strength, the determination, the love and support of his family and friends. I know he can do it.

Tidalgrrrl said...

If anyone can come back strong from a situation like this, I would bet on Chris. He's got the will, the support, and great care. Of course anything can happen but it's not the end of his journey...he's barely at the filling station getting ready to embark.
It'll all be tough, and uphill, and he's going to be constantly pissed off at the lack of what he can do, but that's the way these things work. When I had a serious head injury in 89 it took literally MONTHS for the nerves to re-attach under my skull.

But they did.

The human brain is a crazy thing and there is just no guaranteed anything, even for a 26-yr neuro veteran.

Stace said...

Not that I wish to question the word of the experienced and knowledgeable doctors, but pick up a copy of a book called "The Brain That Changes Itself" by Norman Doidge. I haven't had a chance to read my copy yet (heck, I only got home from having a baby yesterday) but my mum tells me that it's contents would be highly appropriate and useful for a recovering stroke victim - about the brain actually re-programming it's pathways and stuff. Stay postitive!!! LOTS OF LOVE

Anonymous said...

Holy crap. Don't give up. DOn't give him up and do not allow him to give himself up. The brain can reconnect!