My son was in a car accident on 7/15/11. He was life flighted to the hospital and was diagnosed with diffused axonal injury. He was on a ventilator, but has always breated "over" it. They also implanted an external ventricular drain (EVD) to releave the intercranial pressure (ICP). He is now off the ventilator and breathing on his own completely, except he does have a trach in (he has an oxygen mask over it, but does all the breathing on his own). They removed the EVD about 2 weeks ago. He does open his eyes on his own and retracts to pain. The doctors/nurses don't think he follows commands, but we believe he does. If we ask him to lift his hand he will do so. He keeps having what is called "brain storms" and they are terrible to watch. All his vital signs skyrocket when he has them. They seemed to be under control about a week ago and he was taken from ICU to the Peds floor awaiting transfer to a rehab center. Then he got Colitis and is back in ICU, mainly because they couldn't care for him properly on the Peds floor. That's when his "brain storms" began to get bad again.
Do these brain storms ever stop?
People are always telling us that this person and that person recovered from a brain injury, but none of those persons had the same injury. Their's was a stroke or some other form of brain injury. We can't find anyone to tell us about this diffused axonal injury and all the doctors say is it's serious and he could be between 0 & 100% recovered. (That really narrows it down for us!)
Since the accident my son has made tremendous progress. He's gone from a young man that the drs said would be on a ventilator for the rest of his life and have full time nursing care to a young man who can walk with assistance. He's begun to eat anything he wants because he can swallow (although we still need to be careful with thin liquids) and he feeds himself. He gives us a thumbs u or down for yes/no, we're able to bring him home on Sundays. He can go up & down steps with help. He plays checkers with us & other games. There are things we are still working on, cognition & he gets frustrated when he can't communicate what he wants and he shows it with aggression, but that has gotten a lot better. He can sit himself up on the side of the bed, can sit in a regular chair. Can dress himself (with some help) and can brush his own teeth. It's been just over 6 months and he's made remarkable improvement. We had a small set back with a hematoma that emerged which caused him to become aggressive & combative & his right side stopped moving, but it's gotten smaller with medication and the agression has all but disappeared. His right side is slowly coming back too.
Thank you so much for your reply. If you don't mind me asking how old is your son ? My brother is 48 -- They are giving him brain stimilulating drugs to help him wake up. He has been opening his eyes for longer periods of time and seems to be slowly coming around. I was wondering if this is how they treated your son ? I have been doing some research and haven't found alot regarding this type of brain injury, and like you said the doctors just basically say it is a waitin game.....We are located in California -- My heart goes out to you and your family.
My son had just turned 17, 12 days before his accident. During his stay in ICU they were concerned with the ICP (intercranial pressure) more than him waking up. It was probably better that he didn't wake up. But once he got to the rehabilitation center, they began to give him amantadine to help wake him up. I had heard that giving patients 400 mg 3 times a day really helped some patients. My son isn't on that much at all and he really began to "wake" up. We are located in the Pittsburgh area and the center he is at is awesome. He's been there for 21 weeks and he's made a ton of progress. I hope all goes just as well for your brother. Don't believe anything you read on the internet, it's all so depressing. Each person is an individual. They told us our son wouldn't live & if so he'd be a vegetable... He's defiinately NOT a vegetable!!! Find a brain injury support group, they have more info than anywhere else.
I was 30, when on 24th November 2011, I banged my car into a heavy stone wall in the wee hours while returning from a marriage function. I am told, and have seen my own medical reports regarding my injuries, that I suffered with diffuse axonal injury, besides multiple fractures. The physical injuries were all manageable but the DAI had caused me to be in coma for 6-7 days and unconscious for another 4-5 days. During my time in the ICU, the doctors monitored my ICP by way of two holes that I can still feel in my skull.
I recuperated for a month in the hospital, and returned home on 24th December. This was particularly special as in the midst of this month, my wife delivered our first baby girl while my own doctors told everyone around about the same thing they told you. One thing they did mention repeatedly, was that the recovery is entirely up to the patient and his will. I was at home for 3 months, basically re-learning some of the elementary stuff like taking bath independently, brushing my teeth on my own, eating food on my own, walking initially using a walker post the wheelchair and subsequently using a stick, combing my own hair, visiting the rest room on my own, controlling my frustration, not jumping off to death, re-learning how to talk (still learning), etc. Eventually, I re-joined work on 1st April 2011, over 4 months after I was a "24-hours waiting game on a day-to-day basis".
It's been nearly a year since I have been working, a number of things have come back to normal. I drive myself to work and back home daily. I try doing as much office work as possible, although the bigger problem there is to explain to my co-workers why I need a lee-way at times and also that I don't need to be sympathised with 24x7. I still can't talk very well, I can't write at all (banks do not recognise my signature), I walk with a limp and have issues with balance, my eyes burn the entire day, lethargy has become part of life and I play some video games hoping they will help improve my coordination and finer skills.
Besides these, life has largely come back to normal. However, as some of the websites rightly say, frustration has settled in my mind. I was fairly ambitious and doing well for myself, now I am stuck. I wouldn't say that the internet is full of lies, I found stories such as yours here, and it helps.
Hope your loved ones are able to get their lives back to normal, and the same happens to mine!!