New Commer
 

Hello,
I am not sure if this is where to post or not. A brief overview: September 16, 2011 my son collapsed on the football field due to a subdural hematoma. He was life flighted to the hospital where they did emergency surgery. At first the DR said that he thought everything would be fine. Then his brain started swelling three days later, he had midline shift to the right side cavity and then the brain herniated onto the brain stem. They did not think he would make it. They stabilized until family could come. After family got there, he began to stabilize. We were counseled to "let him go" because the brain damage would be extensive. We chose life. He was in a coma for 48 days and then a vegetative state for another 58 days. He was considered semi-conscious Jan. 5, 2012. It is now July 2013. He has no short term memory, still can't walk independently, and has issues with expressive language, and is incontinent. At this point I feel like we are on hold. His neurologist says he is still seeing some improvement. I asked if he is going to get any better and he says he really doesn't know. I just want to know how to plan any future for him while maintaining qualify of life. He seems really happy. But he literally lives from moment to moment and does not remember anything that happens in his life. His speech therapist is at a loss too. We can't seem to find any common way to help him remember anything. Is this all there is every going to be for his Life? I just don't know where to go from here and I feel like I am stuck in one place.

Hello supermansmom
 

I am so sorry for what happened to your son. I know you must feel at a loss, as this brought a trauma into your life where there doesn't seems to be any real answers. Being a caregiver full time, leaves you drained.
What I would hope, is that you find a support group, Neruo Talk encluded. I don't think anyone can predict how far your son will heal, so center some of the concern on your own well being too.
If there are any "day" care facilities you could get your son into, that stimulation may help him on his journey. I think the more interactive he is with others, in different settings, would be of benefit to both of you. I will be here any time to talk to. You found a site that has alot of compassionate people. I hope you get some input from others soon. Live day to day as fully as you can, and try not to focus on the future. That may just increase anxiety. I will keep you and your son in my thoughts and prayers. I wish I had all the right words to say to you, to ease your heart. I care. ginnie:grouphug::smileypray:

I think most here are going to be hesitant answering you because this is out of the realm of what most of us are experiencing. I can say, however, that a number of us have symptoms that are debilitating and yet we wake up every day with hope that the that day will be better or the next day will be better or what else is there? every day new treatments are out and there is real hope in stem cell therapy, however far down the line that may be we are not sure. I am terribly frightened a lot of the time that things may not get better but that fear doesn't really do any good. given the situation, have you looked into clinical trials? just type tbi clinical trials and see if there is anything there for you. if your neurologist thinks there is hope, then perhaps he is right. I know this might not have been the answer you were looking for, but I want you to know, as someone who is semi-continent and scared of the day when I will be incontinent, and who fears his memory lapses will become permanent, I know how important hope is. and love. my girlfriend's love is what keeps me going. good luck to you and you're welcome to the board.

These 2 links may offer some information, they do address some information for families of Severe TBI injured.

DVBIC - whether or not a veteran injury, its information.

Traumatic Brain Injury A to Z - for information and caregiving .

Some questions:

Is he still in hospital?
Is he in a Long Term Care facility or Home yet? Rehabilitation?

Where was his Intensive care provided?

Did he need surgical intervention to decompress the brain? Or just for Monitoring pressures?

Did he or is he suffering any Post-traumatic Agitation syndromes? Seizure Disorders? On medications for either?

Hypertension Issues then or now? Strokes while in hospital? - or suspected?

Endocrine Dysfunctions while in Intensive Care, or Recovery? On any precautionary medications for any Endocrine Syndromes?

Spacticity troubles suspected or being treated?

What Physical Medicine care is he receiving - Physical Therapy, Occupational Therapy - if any?

Sorry, I am only exploring for information to see more of where he is functionally and physically.

I can't offer much truthfully, he does sound to have a very vegetative history, and the future is only something that time and hard long work will decide.

I offer the links for your for information, only; also you might check on Brainline.org for more Family information about TBI. And find a good support group for you and the family.

Supermans Mom,

Welcome to NT. I am sorry to hear about your son. Don't give up yet. I have a brain injury friend who took 2 years to learn to walk and talk. He is now 22 years post injury. He lives on his own and drives. He is on SSDI.

I attend a brain injury support group with many who have been in similar states as your son. Their long term improvement is always surprising.

One young man who had a similar injury on the football field uses an iPad to help him through the day. He uses it to speak when he has trouble. It has prerecorded statement to help others understand him and his condition.

Did they do a decompressive craniectomy to accommodate the swelling ?

My best to you both.

Wow, thanks for taking an interest. I don’t feel so alone now. We live in a very tiny rural area where there are no services. We travel to Salt Lake City, UT about once a month.
Zeth has been home since April12, 2012. We care for him at home. I teach students with special needs and my husband owns his own landscaping business. When I am teaching, Zeth hangs out with his dad at the office or goes out on calls with him, and when it gets too cold to landscape, they hang out at home.
Then I pick him up right after school. Then I teach reading and speech to him. Not bragging, but he was very intelligent before all this, so we have a math tutor teaching him trigonometry once a week and they are soon to move on to pre-calculus next.

He can remember everything up to year 16, except he is very good at recalling math he was taking his junior year too. He was fluent in Spanish and can still recall a lot of it but not fluently anymore. Same with German.
He did go to Santa Clara TBI Rehab in CA, but insurance only paid for 30 days. He now receives PT twice a week for 4 hours a session. The PT is donating all his time, because insurance only pays for 15 days. He has been going since April of 2012.

He sees a speech therapist once a month is SLC and a neurologist once every 3 months. Because I teach a huge variety of special circumstances in my room, I use a lot of my own knowledge for OT. He can get out of bed, take a shower, get dressed, and get his breakfast on his own. He can then go to the living room, turn on the TV and get into his recliner.
After his first surgery from the subdural hematoma, they did a second procedure about 3 days later to insert an ICP bolt, which popped out by itself about 8 days later.
No to the following: post-traumatic agitation, hypertensions, stroke, endocrine dysfunctions
At one time they could not determine if he was having brain storming or a seizure, so he has been taking Keppra ever since. No seizures at all since then.
He has spasticity/Tone and takes Become. At first he had very limited range of motion in his legs and arms. Now everything is movable: but still has tone in left foot, right leg, and hands.
He has an issue where he will suddenly “go to sleep” while doing something with deep cognitive thinking/processing. The neuron has no clue and sent us to a sleep specialist.

He really doesn’t know either and wanted to start him on a drug for narcolepsy, even though he doesn’t think it is that. The insurance wants more testing before they will pay for the drug. So we go in August 6th.
He is taking: amatadine, bromocriptine, potassium, donepezil, and keppra
We have been very blessed. I just feel stuck and don’t know what to do next.