Last post Wed, Mar 26 2008 1:19 AM by vmisch. 10 replies.
On Feb. 20, 2006 my husband was hit by a car while riding home on his european style scooter. He sustained a severe TBI with DAI and now is in a LTAC. Due to how our insurance companies function, he does not receive PT/OT now and minimal ST. I am a registered nurse but ironically there has been limited assistance given to me for resources for my husband. We are in the Las Vegas, Nevada area. There's not much available here for him as far as I know. He is now on Medicaid. I want to be able to get him to Craig Hospital but finances are restrictive. I am at a loss as to what else I could be doing for him. I still work full time and that impacts on things as well. Resources? Any advice? I am overwhelmed here and I want everything for him....thanks for anything you all can give me.
Sherry,
I see this problem way too often. It is important to plug into a physician who is knowledgable in treating TBI patents. There are medicines to avoid and try that are unique in TBI, labs, and follow-ups evals. This is also important to prevent complications as time goes by. Have you looked into the Brain Association:
NevadaFor any questions regarding service or assistance in Nevada, please contact The Brain Injury Association of America's National Family HelpLine at (800) 444-6443 or FamilyHelpline@biausa.org
Dr. House:
I haven't persued a different physician as my husband resides in an LTAC and I guess I thought I'd have to stick to the physicians they have on staff. So, perhaps I should get a listing of those or should I seek his current physician to consult a specialist? What do you suggest? Can you given me some information on meds to avoid and to try. He is currently on Ritalin and Depakote (for seizures which began almost a year after the initial injury). He's on a B/P med (now I'm not so sure if it's a p.r.n. or routine order...I thought it to be routine). I've read some on the use of Ambien, but thought that was to "wake" someone out of a coma temporarily...in any case, if you can enlighten me or refer me to more information, I would surely appreciate. What other complications am I to expect besides the obvious: UTI, Pneumonia, poss. DVT's? Can you suggest any further reading resources on TBI's. There is such a vast variety of information and conflicting data!
I have corresponded some with the BIA organization...however not recently. There wasn't too much here in Nevada. The one place where I hoped for Doug (my husband) to go he didn't qualify at the time and still doesn't. They required him to be able to eat (he's on tube feedings) and he'd have to be able to tolerate a 6 hour day I believe. Interesting, as we all know money talks because Roy (of Sigfried and Roy fame) attended this facililty and has made remarkable improvements. Doug is retired NAVY but the VA sure didn't want to help out at all (it's shameful).
Thank you for your suggestions and any further that you may be able to offer me.
We are having the same problem in Nashville TN Medicar only covers 1 physical theropy visit a week!
My brother is now 29 and the rehab is great but more is needed 1 day a week for 1 hour isn't enough.
if you find any solutions please let me know.
Sorry you are having the same issues
What your brother has in his favor is probably his youth...my husband was 52 when this happened to him so his speed/chance of recovery is affected by that. Hopefully your brother will continue to do well, but it is so very frustrating to see how our medical system treats people who could otherwise do better with more help! We treat our animals better than we do people...shameful isn't it? I wish I could split myself in two in order to stay and do what I think my husband needs while I still worked. Very overwhelming to say the very least. It's not what you know sometimes, but who and money definately talks here more than anything else. Wish the people with loads of money would help these individuals who suffered a TBI rather than some of the other places they put their money...our people at home need so much help. OK...I'll settle down now....sorry, am just at my wits end.
I think we need to ask Oprah for help...or someone like her with some bucks to back up this rehab situation so people could get the help they needed and deserved....oops, there I go again....
I will let you and anyone else know if I find out anything becasue this has sure frustrated the heck out of me..and like I said, I am in the medical community and you'd think I'd know more than this...!
Is your brother at home? In a facility? What type of injury? (if you don't mind me asking that is...)
Needed advice? Well, I guess I would tell you to hang in there! I have had TBI for 29 years now... let me tell you, things that affect you a certain way do not affect him that way. Course, I live in the elderly cheese State. OH! I find it now that I have to be right... everybody can be against me, and ... too bad for them, my mind is kind of the mind of the perfectionist although my life is not, if that says anything to you.
To clarify the my earlier postings, my husband barely talks but a couple to a few words and not consistently. He doesn't always answer me appropriately. I can't tell if he knows where he is or who I am because of the inconsistency in his answers. I treat him as if he knows and when I think he's confused I reorient him. He responds very slowly at times but seems to ironically do better when he is "talking" on the phone with family or me if I were to be calling him. Occasionally I get "I love you too" from him when I tell him I love him.
He cannot eat due to risk of aspiration so he sustains on tube feedings. He cannot walk, he cannot care for himself. So, his injury (diffuse axonal injury) has left him requiring total care. I understand the severity of this injury as a nurse. I understand that there is a likelihood he will always reside in a skilled nursing facility...I hold hope that he can get the rehabilitation to become able to do more...speak, maybe walk with an assistive device...maybe come home for visits (that would be awesome!). I need advice, guidance, resources for him and his future care. I'm looking for you all to impart on me from your own personal or family experiences. Thanks!
Hi Again, has your husband try dilantin, I've taking it for forteen years. Along with lyrica. I take 300
mgs one night the nextnight I take 400 mgs. The lyrica 50mgs each night with my dilantin. And 50mgs
of lyrica during the day. I use to take nuerontine, dr. Yarnell, one the one who i went back to see after i
had my first grand mall, At the time i was married and had Kaiser hmo. The docter there would do
nothing to find the right amount of mgs. Or to help me through the tightness and aches and pain. One dr. told me that they all make you feel that way. When they new about lyrica and nuerontine. Dr. Yarnell isn't fond
of Kaiser Hmo. For my anxiety i take Zoloft. Fifty mgs aday. There another rehab in colorado it is called
mediplex rehabilitation Hopital. Dr. Yarnell is a associate to that also. I will look up dr Yarnell phone number.
And send it your way tommorow thousand points of lights
I don't know if I can really add anything to the advice you've already been given - but my 26 yr old son Michael was severely injured in a car accident last June - he had been driving 3 friends home from a concert, when he realized he was too tired to drive. He gave the keys to his friend and fell asleep in the passenger seat. About 3 exits from home, the driver fell asleep and my son took the brunt of the oak trees that were hit. One passenger in the back seat died in the crash...
Michael suffered a broken femur and knee, broken forearm and elbow, broken jaw (in 2 places), broken rib, lacerated live, numerous facial fractures, and diffuse axonal brain injuries from 5 separate and distinct brain injuries. He was in a coma for 3 weeks, had a respirator, ICP probe to measure the pressure in his brain, underwent numerous surgeries, had a trach, his jaw wired shut, etc, etc, etc. He went from the Trauma hospital to another hospital, then to an acute care rehab facility, then home for 4 horrible days... then back to the hospital, and then to the care home he currently resides in. All along the way I've had to battle doctors, insurance companies (he has Kaiser, so the medical folks and the insurance folks are on the same team...), government agencies, nurses, medical equipment people, etc, etc. It's been a definite learning experience, one we're never prepared for, no matter what. The only advice I can give is to research, research, research!! Find out what treatments are available for your husband, and find out where they're available. Find out how to get those treatments for your husband. Make phone calls, e-mail, hound the powers that be until they give you what you want (even if it's just to get rid of you, whatever it takes!).
You can take Family Medical Leave to concentrate on caring for your husband's needs - I left a wonderful job here in California the day my son had his accident - thanks to wonderful co-workers, a fantastic boss, and loving and caring friends and clients, my youngest daughter and I were able to follow Michael from facility to facility, staying in motels, to make sure he was getting the care he needed and deserved - and he didn't always get that, so I made noise, a lot of it. Now he's at a nursing care home near my home, so I'm able to have a bit more of a 'normal' life. At least I can sleep in my own bed at night, and can be with my husband :-) My boss paid me for 2 1/2 months, even though I wasn't going in to work... then she had to hire someone else to fill my job, which I totally understood. So I went to my doctor, and went on State Disability, due to stress (ya think I have stress??). That will run out in September... so until then my main focus is Michael - making sure he gets what he needs, when he needs it. He's getting great care in the home he's in now - very good as far as nursing home care goes. But I'm there a lot, and they know I won't hesitate to let them know what Michael needs, and to go over their heads if necessary.
When they want to change a medication (he's on a Fentanyl Patch, Baclofen, Cymbalta, Neurontin, Tylenol, and various vitamins, antacids, etc) I research it and the side effects online, and let them know what I've found out and if I agree with the medicine change or not. Michael was on a feeding tube until just about a month or so ago - he'd gone from total tube feeding (he has a g-tube) to just medications by tube, and now he takes his medications orally, so hopefully one day soon they'll remove the tube.
Youth does help as far as recovery (Michael can now speak, sits in a wheelchair for about 4 hours a day, but can't stand or walk at all). The down side of his age is that there aren't any facilities for his age and condition. There are programs and facillities for minors, and for the aged. Even most nursing homes wouldn't take someone under 30 - so what do those people do?? We're very fortunate, Michael knows many of the staff members at the care home he's at. And he has charmed most of the rest of the staff, too - they all watch out for him, and make sure he's well cared for.
Pop in on the Nursing Home at various hours - see how the different shifts do their jobs. Make sure they know your name and your face - form some sort of relationship with as many as you can, so they feel a connection to your husband. Haunt his doctor, call around and find out if there are other doctors who will take over his care - many private practice physicians regularly visit patients in nursing homes. Call Easter Seals and see if there's anything they can do to help you. Have your husband re-evaluated by the therapists, to see if there are therapies he can continue to do - ask if there are things you can do with him and for him when you visit. I've purchased things to help Michael with his therapies (he doesn't get PT or OT anymore, because he's reached a 'plateau'...) - also, we play games... cards, Connect Four, dominoes - we watch Jeopardy, Wheel of Fortune, Are You Smarter Than A Fifth Grader... I have photo albums with photos of friends and family members that we look at often. We have a calendar on his wall, and make notations of all sorts of things on it, and remind him every day what day it is, what day yesterday was, and what day tomorrow is.
Sorry this rambled for so long. But I hope I gave you some suggestions that might help. If you'd like, please feel free to e-mail me at teetem@gmail.com
Valerie
