On April 26, 2010 Quintin experienced what may have been a cerebellar stroke.While crossing the street with his best friend, Quintin fell backward and hit the back of his head on a curb.He was unconscious for several moments, then was able to walk, with assistance, the short distance back into the building.After showing signs of a serious concussion he was taken in an ambulance to Legacy Emanuel hospital.
He was in the ICU at Emanuel until his 29th birthday, June 5, when he was stable enough to transfer to the hospital’s Trauma Care Unit (TRACU).After nearly a month in TRACU he moved to Vibra Specialty Hospital in Portland.
At the end of October Quintin moved to an adult foster care home in Vancouver, WA.He has excellent around the clock nursing care from a team of people who believe in his potential to make positive progress toward recovery.
At times he seems alert and “awake,” other times not.He still has a tracheostomy tube in his throat and is sometimes on a ventilator to assist with his breathing.He is able to breathe independently; when he's on the vent it's usually there as a precautionary back up when he has a fever or needs his energy for something else that's going on.The trach does not allow air to pass over his vocal cords, but speech therapists can periodically check to see if he’s made progress towards being able to speak.
When he fell his occipital bone was broken, causing a brain bleed. The bleeding obscured the injured area, so we may never know the cause of the fall.It took several months for the internal swelling around the injury to subside.Now that the swelling is gone, CT scans have shown that there are damaged areas in the cerebellum, pons, and brain stem.Typically, brain tissue does not grow back, but it IS possible for connections in the brain to reform, and that’s what we are patiently waiting for now.
Quintin has been in the hospital for several days but returned tonight to his home care facility.He had a fever and it was thought he might have a mild case of pneumonia, so they put him on antibiotics while we waited for test results to come back.Because his white blood cell count was normal and chest x-ray was clear it’s unlikely that it was pneumonia, so the infectious disease specialist stopped the antibiotics.The next day his fever resolved.Sounds backwards but we’d rather not have him on antibiotics if he doesn’t need them!He looked great today and yesterday.
While Q was in the hospital his GP and one of his neurologists saw him.The neurologist decided to start him on a drug called amantadine.A recently published study showed amantadine can help boost consciousness in patients recovering from traumatic brain injuries.This short article gives a good outline of the study.
At the year mark we (Quintin’s family and doctors) continue to see positive progress.He’s been learning to use the headset a bit more, hopefully to communicate in some basic ways – Dale has been consistently working with him to use the up and down controls of the orange cube as yes/no responses to questions.It’s slow going, but there’s progress, and we look forward to future milestones.
First, a doctors update. We now have on the doctor roster a new general physician (the first one we had didn’t work out), a pulmonologist, the wonderful neurologist I’m about to tell you about, and another neurologist who we’ll meet next week.
Quintin had a bit of a fever in early January that persisted long enough for the nurse who manages his foster home to send him to a hospital until the fever resolved.The fever got better within a few days but Quintin stayed at Legacy Salmon Creek for about a week beyond that because we met a neurologist there who took an interest in Q’s case.
It all started because Beverly asked the hospital nurses about the potential for seizures.For months now Q’s had a sort of tremor around his mouth; his lips twitch fairly regularly, almost with his heartbeat, and that’s what Beverly was concerned about.So they did an EEG test at the hospital.No seizure activity is apparent, and it sounds like we’re past the point in the healing process where seizures would be a real concern.
The neurologist who read that EEG has been extremely helpful and hands on since then.He explained potential tests (some simple, others very technical and expensive) we could undertake to find out (as much as is possible) what kind of activity is going on in Q’s brain.After a few simple tests it’s been determined that Quintin can see and hear.Because of that, this neurologist has recommended that we increase the visual and auditory stimulation he receives, and that we try to find a way to help him communicate.
Because Quintin still has the trach he can’t speak, though it is in his routine now to have the “talking valve” on sometimes, to get his throat muscles back in shape in hopes of eventually removing the trach entirely.And while we occasionally see new small movements in his extremities, he does not have normal motor control.So, knowing his brain is active, how do we help him communicate?
Enter “the headset”.Q’s neurologist turned up information on a new device called “Emotiv”, which is a headset that essentially reads your brain waves, like a mini-EEG.Because the pathways in our brains are all different, you first have to train it to recognize how your specific brain lights up when you think “left” for example.Then when the headset sees that pattern again it knows you mean “left.”It’s hard to explain anything more related to the headset until you’ve seen it in action, so if you have 10 minutes you should watch the video of the TED Talk given by the developer, and then read the rest of this post.
Now that you have a visual of the orange cube I can tell you what happened.I wasn’t in the room, but Dale related this story to me shortly after it happened.The first time Dale and the neurologist gave Quintin a shot at the headset he moved the cube with mental commands.Not every time he was asked, but enough to convince Dale, the doctor, and a roomful of nurses who accumulated during the test run that, in the words of one nurse, “my God, he can DO it!”I’m told the tipping point was when the doctor told Quintin to move the cube right twice, and left once, and he did it.
Since that successful first run the headset had trouble holding a charge (I think Q fried it with his powerful brain waves) and the replacement just arrived recently, so I’ve only seen Jedi Quintin in action once.He was pretty sleepy so we didn’t ask him to do too much, but there’s no denying he was moving the cube.
The next step is to get him comfortable and used to the headset enough that we can get a reliable “yes/no” response in some way.Some computer programmer friends are on board to play with the developer version of the headset and it will be exciting to see what comes of that collaboration.
Technology is amazing.Almost as amazing as the human brain.
