Need Recommendation for Ventilator Weaning and Rehab Program

[debmom]

My father is currently at Mount Sinai - he's been there since February. He has not been moved to rehab -- he continues to have problems with secretions, pnemonia, bed sores, etc. The rehab unit can't take him because he's still ventilator dependent, and they only have two spots for that. I'm looking, for options. So far, I've identified Kessler in NJ, Thomas Jefferson in Philadelphia (where I live), Helen Hayes Hospital in Rockland County, NY, and Strong Memorial in Rochester, NY. I'd appreciate any feedback or advice anyone may have. I'm concerned that the lack of physical therapy (2-3 times per week) and lack of respiratory therapy other than albuterol and similar medications and frequent directional suctioning, are creating a "vicious circle" with regard to his weaning. Due to his medical issues and extreme anxiety, he's been unable to tolerate anything other than pressure support for more than an hour or so. We're trying to evaluate the care he is currently receiving, ask the right questions, and plan for the next step. My parents live in Buffalo. How important is CARF and other types of accredidation? Being away from home for three months is taking it's toll on my mother, both emotionally and financially. Thanks for the advice!

[SCI-Nurse]

I would recommend any of the SCI Model System Centers, many of whom will take patients at your father's current level of acuity, either directly into their rehab program or into the ICU associated with them where you can get SCI appropriate services. Kessler and Thomas Jefferson are both centers with good experience and track record in this area. It would probably be less stressful on your mother to have him closer to home.

I would strongly urge you to only consider a SCI rehab program that is CARF accredited for this specialty. There is a difference, and although CARF accreditation is voluntary, it is an indication of meeting certain standards, and indicates a desire on the part of the program to meet or exceed these standards.

In addition, is your father a military veteran? Is so, you should also explore use of one of the VA SCI Centers. There is an excellent program at the Bronx VA Medical Center, and a PVA National Service officer can be of real assistance in this process.

It is much more difficult to get an older person into many SCI programs, as their medical outcomes and rehabilitation outcomes are much more difficult to achieve and generally take longer than insurance will allow for inpatient stays. This is one definate advantage of the VA system, even if you have the co-payment.

(KLD)

[debmom]

Thanks for your reply, SCI Nurse. It looks like a spot may become available at Mt. Sinai in the rehab unit, and they are a model center. I have noticed, however, in the 3 months that my father has been a patient, that the hospital is in finanancial distress and is having labor problems with its nurses. I am concerned that although it has Model Center status, that they are not capable of providing treatment at that level at this time. Do you know anything about the level of care at Mt. Sinai? I would appreciate your help, and would also be grateful for anyone else's reply.

[CLC379]

i was on a vent for a while. everynight i would take 10 breaths as deep as i could no matter how small they were or how tired i was.

i gradualy built up to more then weaned. i never spoke to my roomate but he told me later he copied what i was doing after 15 years on the vent he was weaned. it was a shock to me that he picked up my routine that was only known to me & the vent.

[cheesecake]

In the past, Mt. Sinai has had an excellent reputation and patients have received wonderful care. Model Facilities have the same problems as other hospitals...staffing, finances, etc.

I am not thrilled with any of the other facilities that you have listed either. Jefferson ie. Magee has a younger, patient base. I have heard the same complaints about them as you have about Sinai.

There is a HealthSouth in Pittsburgh that is CARF accredited and does great with vent patiets. I have seen them wean people that it was not thought possible to wean They have also returned many patients home who otherwise would have been in a nursing home.

If you would post an email address, I will contact you directly.

[debras]

I think a friend's family can relate to your problem. There are not alot of good facilities for SCI, especially for vent. dependent patients. I have been doing alot of research, and Craig Hospital is one of the best. However, they are in colorado, but the doctors there are willing to talk to your dad's doctor about their program to wean him off the vent.--if he is able to get off the vent. Don't know much about the rehabs in your area, looking for one in south florida. But I heard HealthSouth is fairly good. There is a shortage of nurses, and from what I have learned, you really need to keep an eye on his care as much as possible. If you don't see something you like, then open your mouth. Good luck to you.