View Full Version : Coming Home
bthesing
06-17-2002, 06:04 PM
My husband is c-3-c7 incomplete, I think. I don't know what compelte and incomplete mean. He passed out and fell from floor from chair. He is rehab right now at St. Judes in Fullerton, CA. They want to send him home in 3 weeks. He has been there 2 weeks. He is a quadrapelgic, as has limited used of hands. Arms and wrists ok but paralysis in legs. Has some feeling and can move right leg up to chest in bed. Drs. and PT does not know what prognosis is. He seems to show improvement every few days. They are working really hard with him. He can not transfer on board without a lot of help. I can't take him home until he can transfer in and out of car by himself. They are working on his bowel program and are going to train me to cath him. We are senior citizens, but we were very active until this accident. He used to walk 3-4 miles a day. We were always traveling. Does anyone know of a travel website for the disabled? Caregivers should take time out for themselves, to do something they really like to do so they don't resent that person for tying them down. I intend to go the beach at least once a week for 2-3 hours. I also will not give up CW dancing once or twice a month. Go to lunch with my girlfriends at least once a week. Join a dance or excercise class. What can I expect when I get him home? Anybody have any input?? He has a very hoarse voice and trouble swallowing, because of surgery.
Call your local agency on aging for PCAs, the independent living agency for home modifications. Then call family so they can come and be by your spouse's side in case of emergencies. Did they put him in a halo brace? I have a technique for showering with one if you want it. You should probably become acquainted with the search function here. It will become an invaluable tool soon.
"And so it begins."
bthesing
06-17-2002, 09:37 PM
No no halo on him just a soft collar in bed and a Gilford Brace on him in the chair. We are going to wait on home modifications to see if per chance he walks again. But will contact my senior center here in Costa Mesa and see if they can direct me to PCA's in this area. My big concern is getting him in and out of the car. I know I will need an apparatus on back of my Blazer to lift up wheelchair and put in back. Does anyone know about these kind of carriers for wheelchairs? He has movement in both legs and he can feel his butt. He has no flesh back there and hurts when he sits to long in wheelchair. Has lost 31 #. His swallowing and voice are not good yet (from surgery).
marmalady
06-18-2002, 04:58 AM
Hi, Countrygirl -
As TD said, start now on making arrangements for getting PCA or home health aide help at home. Talk with your insurance company case manager. Are there 'team meetings' at the rehab center? These are usually held once a week, and include the physiatrist, all therapists, and someone from the nursing staff. It should include you and your husband, also. This is where evaluations are made as to progress, discharge dates, skills gained and skills still needed to provide a safe discharge to home. I would suggest that at least you, and better yet, both of you, attend these meetings if you're not already doing so.
He should be fitted with a wheelchair, and also a seating system which will help prevent skin breakdown from sitting too long. Does he have enough strength in his arms to do a pressure relief when he's in a chair?
You may want to post a question about chair lifts on the 'Exchange' forum here; I know folks on the forums have 'em, and they may be able to help out. Here's a source for chair lifts, and is also a good general source for a lot of the supplies you'll need at home:
http://www.allegromedical.com/home/Manufacturer-SubCategory.asp?C=544&S=3847&M=15225
It's frustrating, I know, that the docs and therapists can't/won't tell you what kind of improvement to expect. It's mostly because they don't know; this soon after his accident, his spine is still in 'shock' and it will just take time for the inflammation to go away, and for systems to begin to try to work again. Studies have shown that you can expect some recovery up to two years post-injury, and people have reported recovery up to 20 years post! Not a complete recovery, but a return of some sensory or even function that they didn't have before.
It sounds as tho you and he were pretty active folks; my advice would be to demand of his physiatrist that he be placed in a rigorous outpatient rehab program on his discharge from inpatient. The more he exercises and works out, the better shape he'll stay in, and it may work toward more recovery on his part.
The weight loss, weakness, and scratchy throat right now are all pretty transitory; they're a result of the injury, the prolonged stay in bed, and the surgery. Once you get him home to that good 'country cooking'(!), and he's getting better nutrition than in the hospital, I think you'll see a big difference!
Your attitude is remarkable, and it sounds as though you're doing what you need to do, to help hubbie and also maintain your own sanity. Keep up the good work, and feel free to ask away with any questions or problems that arise!
How are your husband's spirits? It's certainly not unusual to be depressed at this point for him? Is he playing an active part in his rehab? The more he can do in rehab now, the better off you'll both be once he's home.
Lots of luck, countrygirl!
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Tough times don't last - tough people do.
Originally posted by Marmalady:
It sounds as tho you and he were pretty active folks; my advice would be to demand of his physiatrist that he be placed in a rigorous outpatient rehab program on his discharge from inpatient. The more he exercises and works out, the better shape he'll stay in, and it may work toward more recovery on his part.
If your spouse can still stand/walk then go to his out patient PT with him and ensure his physical therapist is getting him up and walking. Some PTs will look at his age and want to take a gentle approach. This can work against your goals of him walking again so let the PT know you will not stand for it. The sooner your spouse begins doing for himself the better off he will be in the long run. Love and support him but do not be his hand servant once he has healed. The sooner he learns to be independent the better off the both of you will be.
Being able to stand is a giant step in the right direction in preventing pressure sores. I, too, have "nothing back there" and I have found that a roho cushion is best. Definitely talk at length with the PT and physiatrist in the hospital about what is the best thing to get him to make him comfortable. their recommendations should be treated like "doctor's orders" when you talk to your insurance company. Do not let them skimp!
Bringing him home, especially if he is in a powerchair, can be tricky. A call to your local public transportation should be made. They have vans for wheelchairs that can be used while you are looking for the right media for transporting him on a permanent basis.
Finally, do not let them discharge your spouse just to satisfy the insurance company. If you feel there is more that needs to be done in the way of training (for either of you) then fight to keep him in rehab.
"And so it begins."
If you husband is a veteran, he may be eligible for both durable medical equipment and more inpatient and outpatient rehabilitation therapy at the VA SCI Center at the Long Beach VA. They are not nearly as strict as private insurance or Medicare about length of stay in rehab. If he was in the service and served during time of war he may also be eligible for a VA pension. This is important to look into right away.
Your local ILC for that area (I assume you also live near Fullerton?) is:
Dayle McIntosh Center for the Disabled
150 West Cerritos, Building 4
Anaheim, CA 92805
Ph: (714) 772-8285 (Voice)
Fax: (714) 772-8292
TTY/TDD: (714) 772-8366
South County Branch
27782 El Lazo, Suite 100
Laguna Nigel, CA 92677
Ph: (714) 643-7275
Fax: (714) 643-7284
The social worker at St. Judes should be talking with you about any benefits you have that may cover attendant care. Unfortunately this is rarely if ever covered by private insurance, and is not covered by Medicare. If you are low income you may qualify for IHSS attendant funding, but not if your income is too high.
With as much return as he is getting, it will be critical to get on-going outpatient therapy. You will have to PUSH for this with any insurance. Be sure to go someplace for outpatient where they know something about SCI.
Also ask about getting a lift at home for transfers. There are lifts that you can use both in/out of bed and in/out of a car. Don't risk hurting yourself by trying to do too much with the transfer. Until he is strong enough to transfer, renting a lift may make a lot of sense. Unless he has no tenodesis, he should be learning to cath himself. Please talk to the nurses about this.
There are tons of web sites about travel for people with disabilities. Here are just a few that you might find helpful:
http://dmoz.org/Society/Disabled/Travel/
http://www.access-able.com/
http://www.gimponthego.com/
http://www.geocities.com/Paris/1502/
http://www.makoa.org/travel.htm
Also, if you are interested in cruises, these two sites both have discussion boards for disabled cruisers:
www.cruisemates.com (http://www.cruisemates.com)
www.cruisecritic.com (http://www.cruisecritic.com)
Good for you knowing that you need to take care of your own physical and mental health in this process. Too often I see wives who give up everything...and this is not good for either you or him.
Keep coming back here with questions. We will try to find you answers.
bthesing
06-18-2002, 10:14 PM
Today I was at St. Judes most of the day and this is what they have told me so far. They are teaching him to transfer on the board and said he is doing between 50/70% himself, which suprises everybody. Shows me he is trying hard. They also tell me he will have a wheelchair that comes apart, that is the wheels come off and arms, leg rests, back and I should have no trouble getting in the car (should only weigh 25lbs). They are having trouble with insurance to OK the wheelchair people to come out now. But everything is a fight with them. They are taking him and others on an outing this next Thursday and I will be there. His spirits seem good and they say he can even move the wheelchair with the special gloves that cost $50. Should they have him a standing frame?? They tell me most patients pass out the first time they stand up. I have been to the VA in Long Beach and he is not a war vet, he was in the Navy for 18 months as a drafty back in 1955-57. At Long Beach they told me they are very fussy about who they take in as war vets are first. I am pretty sure he will be going to St. Judes for out patient rehab. He is so proud that he is making progress. I can see him move his legs when he is transferring - is that a good sign?
do not give in to them. Please contact your local Paralyzed Veterans of America office and get him a benefits advocate. You can access their website at www.pva.org (http://www.pva.org) to find the office closest to you. He is a veteran under the old GI bill and even though the US was not at war at the time he served (Vietnam was not a war, it was a police action but I still qualify) he should still get special consideration. Make sure he gets a Level 4 (catastrophic disability)rating too. Your PVA-SO will be able to help.
"And so it begins."
marmalady
06-19-2002, 03:31 PM
What TD said!! We all know the insurances - including VA - are out to save as much $$ as they can, and you have to be that squeaky wheel that gets the grease!
It sounds as tho your husband is making a lot of progress, and is a real fighter himself. I applaud you both for having the strength to deal with this at this stage in your lives. You both sound like real troopers!
Moving his legs when he transfers - is that a good sign? YES, YES, YES!!! http://sci.rutgers.edu/forum/images/smilies/cool.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif http://sci.rutgers.edu/forum/images/smilies/cool.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif http://sci.rutgers.edu/forum/images/smilies/cool.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif http://sci.rutgers.edu/forum/images/smilies/cool.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif http://sci.rutgers.edu/forum/images/smilies/cool.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif
_____________
Tough times don't last - tough people do.
I agree, do not take no for an answer from the SCI unit at Long Beach. He is entitled to care there, and while service connected veterans are a higher priority, I know that they usually have empty beds there, and you can put some pressure on them to accept him.
He could get so much more equipment and appropriate long term follow up there than he will ever get through St. Jude's. While it is a good center, it is likely that you will have very limited outpatient care there as most insurances will not cover much more than a few visits. The VA would purchase a standing frame, hospital bed, wheelchairs, commodes, etc. without any cost to you. In addition, you may be able to get all his meds and supplies there with only a small co-payment.
Here is the PVA chapter office in Long Beach. Call them to get the number for the PVA NSO in your area. He can talk care of all the paperwork for eligiblity, and if your husband joins PVA (free) the NSO can also act as his agent for getting him admitted to the Long Beach program:
California Chapter
5901 E. 7th St.
Building 122, Rm.F-130
Long Beach, CA 90822
Phone (562) 826-5713
(800) 497-0565
Fax (562) 826-5140
E-Mail calpva5@aol.com
I found this in my PN Magazine (June 2002). Call Altimate Medical Inc. at 800-342-8968 and ask them to send you a copy of the free Video "Life after SCI: Volume 2, Transferring and Adapting". You will most likely get on their mailing list (probably a good thing at this point).
Start thinking about adaptive clothing for your spouse. The pants he used to wear will start becoming difficult to get on and adjust to make him comfortable. Do you know if he suffers from AD (autonomic dysreflexia)?
"And so it begins."