Dave,
The following info is offered from a different perspective to help you ask questions and get the answers you need for your wife's care and to make decisions.
I use to work for an acute care rehab facility and it is one of 2 facilities outside of acute care hospitals in this region that will accept individuals on ventilators. The other facility is a LTAC (Long Term Acute Care facility) that specializes in ventilator/respiratory management or chronic/complex medical issues. I am not sure if your wife is at this level of care or not. Many people on ventilators are transferred to LTACs rather than rehab to be weaned from the ventilator or to train caregivers to manage the ventilator for home use.
The admissions to the rehab facility are evaluated closely because the lack of committed 24 hour caregivers and problematic placement (translated to mean expensive) if the caregiver backs out given the limited alternative level of care facilities that would accept a ventilator. The local nursing facilities (sub acute long term care) in this area will not accept individuals on ventilators. The closest facility is over 2 hours a way and has a waiting list that can take years. Thus the screening process includes making sure that 24 hour care is in place and back up/alternate caregivers are available and trained.
Another reason acute care rehab facilities screen patients closely on ventilators is the facilities are required to provide all inpatients 3 hours of therapy 5 days per week. Not everyone can tolerate this much therapy. Some ventilator dependent individuals are admitted for a ventilator teaching stay that last for about 2 weeks and concentrates on teaching and evaluating for home equipment, supplies and modifications as needed. They will also help you tap into local emergency medical and community resources in case of power outages, etc.
So assuming acute rehab and then home is the goal, I would call the rehab facility directly. Ask them if they accept ventilators and what are the requirements. Ask if she can not be weaned to the point of just being on the vent at night, would she be able to come to the facility for ventilator home management training combined with physical rehabilitation. Keeping in mind a person with ALS should not really be pursuing an overly aggressive physical rehab but rather one that is tailored to her needs to help her gain back what she can, maintain her range of motion and learn adaptive techniques to maximize her ability to help in her care. If they are willing to work with you then you can outline for them your commitment to 24 hour care at home potentially on a ventilator and designate who your backup is and that they are also willing to learn ventilator management.
Next, I recommend you start learning the ventilator and trach care at the facility she is now. This demonstrates that you are seriously going to do the care and give you much more leverage. Over time, you may very well learn what you need at this facility and could take her home from there.
Also learn what type of home health/respite programs are available where you live.
I think I have rambled on enough but would be willing to offer suggestions as needed/if wanted.
Dana
