What's after acute rehab?

[MedicChic720]

Hello,

My name is Tracie and my boyfriend is a recent (May 8th 2009) C-5 incomplete. After surgery and some time in the TICU he was moved to Acute Rehab. He loved it here! He got 3 hours of therapy per day from some great therapists. He has made a lot of progress but still none in his legs. He last day in acute rehab is tomorrow and they are recommending sub-acute rehab. They dropped the bombshell on us today that he did not get accepted into sub-acute rehab at the hospital he is in. He is very disappointed especially because they want to send him to a nursing home with a not-so-good reputation. We live in Buffalo, NY and there does not appear to be many rehab places around here. Does anyone have any suggestions?

[tgoodwin]

Hi Tracie,
Exercise therapy after acute care is a must. My son has the same injury and goes to Project Walk in Carlsbad, CA. There is a similar place in Boston...not sure about New York. My son has recovered so much from working out...it is amazing. Visit projectwalk.org. They may have some info about east coast places. Good luck and you'll be amazed how much your boyfried will recover...it is a slow process but exciting.

[RAFS]

Sorry to hear that a bomb shell has been dropped on your boy friend. Is he by chance a fellow Veteran? If he is he should go to his nearest VA SCI Center immediately. The sooner the better. Perhaps KLD or Dr. Wise Young or one of the other SCI nurses will chime in here. I wish you & your boy friend the best. I'm sorry to hear that he was hurt. Welcome to Care Cure sorry you had to find us but glad that you did. Please let us all know here on CC how he's doing.

There are other premier Rehab facilities in the country. If his insurance will pay for him to go to one of them that would be the best thing to do. The more Rehab he has the better the outcome will be & will be the key to what his future life will be like.

[SCI-Nurse]

Where is he doing his rehab? How long has he been there? What is his insurance? Has he appealed the decision to discharge him from rehab? Is he still making functional gains? It is his insurance that cut him off or the rehab center? Is he willing to travel to get to a better program? Unfortunately most insurances will not pay for more acute rehab at a different facility...it is usually a once-in-your-life deal.

Is there some reason he cannot go home and continue with a fairly intensive program as an outpatient? Subacute rehab programs rarely have the expertiise or staff who know anything about SCI, and he is likley to be the only one on the unit under the age of 70. If he is lucky, he will get 1 hour of therapy total daily. I DEFINITELY would NOT allow him to go to a nursing home. It is a nearly sure way to get pressure ulcers, depression, little therapy, and often poor nursing care. MOst nursing homes will not do intermittent cath, for example, and good luck getting a proper bowel program or anyone who knows what to do if he should be AD. He might not get any therapy at all, even range of motion. You need to help him fight this. They cannot place him in a nursing home against his will.

(KLD)

[PeanutsLucy]

If it's any help, we set up an exercise program at home for my son and did outpatient PT at the hospital once he was discharged from rehab. Our PT was able to set up a program for and and we added things as we went along. I can't say enough about exercising in those months after injury.

[MedicChic720]

Right now he is at Erie County Medical Center. That is our trauma center here in western NY so he has been there since his injury. He was hoping to get into sub-acute there but apparently they are looking for patients with fast turn-arouns (2-3 weeks). They have told me that the nursing home that excepted him is his only option right now because they accept patients before figuring out what his insurance will pay. To me it seems like he has made a TON of progress! He never lost his shoulder or bicep muscles but they were very weak. He has gained a lot strength and also has complete control of his triceps now. His OT said his wrist retractor muscles are firing but they are still too weak to actually lift his wrists. From what I understand, he has a lot more core muscles than they expected him to. He has made it up to 90 degrees on the tilt table and can hold himself against it at 85 degrees. There has not been any muscle firing in his hands or legs yet. It has only been 8 weeks and the hospital has been telling us that this will be a slow process. Now they are saying he hasn't progressed fast enough and he has to leave...it doesn't make much sense. He has Blue Cross/Blue Shield insurance. I didn't know you could appeal a discharge decision. He would be willing to travel he said for the best care he could get. The nursing home he is going to does have an SCI unit but I still haven't heard many great things. At least if he goes there we will have time to do research on other places. We are both paramedics so trust me we know exactly what goes on in nursing homes. Thanks for your quick responses. Hopefully I answered the right questions and can get some more feedback.

[BigK]

We have 2 huge rehab centers down here in Pittsburgh. One is even 1 of about 14 Model Centers in the country. Pittsburgh is about 2 1/2 hours from Buffalo.

[MedicChic720]

And thanks to everyone for the warm welcome! Its nice to know there are people out there that understand what we are going through.

[SCI-Nurse]

So did you have him appeal the discharge decision? Any way you can get him to a more appropriate SCI center such as the one at Pittsburg above (a leading research center for SCI rehab, by the way)? Being close to home and friends is great, but not if it puts him into a nursing home. Remember that the acute rehab is like boot camp/basic training. Without a good foundation, it is very difficult to make a success of living with the challenges of SCI.

I still don't understand why he must go to a nursing home instead of going home with help and continuing with an outpatient program (preferably someplace else than Erie where they wrote him off so easily).

(KLD)

[MedicChic720]

Well he got transferred to Healthsouth Rehab Hospital in Erie PA on Friday. It's a free-standing acute rehab hospital. They specialize in strokes, Parkinson's and Brain Injury but also take SCIs. We originally were going to take him home but then he got accepted to this place. What we don't understand is they told him he was done with acute rehab and would not get anymore from the insurance company. I didn't even bother looking for another facility because they told me his insurance wouldn't pay for it. Then his insurance approved him going to this place. It doesn't make sense why he had to leave the place he was in. Now I am just afraid he went to the wrong place. Healthsouth has a good reputation for their therapy but if he had to go away I wanted him to go to a place that SPECIALIZES in SCIs. So I guess he can probably be transferred again but I don't know how to go about finding out if insurance will cover it. Any thoughts?

Tracie