Sherryl6007,
Hi, welcome to the community. My husband also has a C4 injury and was paralyzed in an auto accident 7 years ago. I am so sorry to hear about your sister. It is very possible to live at home with a C4 injury. I won’t say it is always easy, but it is very doable.
My husband has been home since his initial rehab. Some days it is a struggle caring for him or finding people for that role, but like you, I didn’t want him to go into some facility.
He was actually on a vent for 7 months before he was able to wean off. I would keep pushing about the facility and trying to get her to the best possible place. Vent management is totally different for SCI patients than it is for regular patients. I didn’t find that out until I had my husband moved to one of the model SCI facilities. We actually live in Indianapolis, but I had him transferred to Craig Hospital in Denver, CO for SCI rehab. It is one of the model SCI facilities. I learned all about vent management and weaning for SCI patients. The first thing they did was change all of his vent settings which he had been on for the first 6 weeks of his injury. They told me that is a mistake they see all the time when most doctors or hospitals don’t really understand vent management or weaning for SCI patients. I kept a vent journal over the months he was in rehab. Let me know if you have any specific questions, but I know your sister would have more success at a facility that understands SCI.
If her injury is new, it is very hard to predict her ultimate outcome. Some people don’t have complete injuries and can regain some or a significant amount of function. The hard part is the waiting to see just what is going to happen. My husband has a very complete injury and didn’t regain much function at all. He has no arm or hand function at all. In these cases, getting the proper and correct equipment is so essential to having some sense of independency. No matter what kind of insurance you have, it is difficult and you have to constantly push and fight with the insurance companies. You said she was in an auto accident. Is there a possibility of recovering funds for her care from an auto insurance policy? We went through that fight too, but it is something you have to do if this is a possibility in her case.
I just got back from Nashville last night. I have extended family there and have been down a couple of times this month.
Please feel free to ask anything, and we all will try to help. Or you can also send me a private message anytime. Keep us posted and take care.
Trish
"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."
