4months post stroke...still in ICU

[tdstewart]

My mother had a stroke 3 weeks following a hip replacement. The DR. found a blood clot in her neck. In October, we were told that the stroke was massive, to be prepared for the worse. After 4 weeks in the Cleveland CLinic, completely on a ventalator, trech, feeding tube, and other tubes, she was transfered to a hospital unit in a rehab clinic. In January, the DR at the rehab clinic found that her hip looked out of place, and they rushed her back to the Cleveland Clinic for surgery to relocate her hip. It has been since January 8, and she is still there, on a vent, trech, feeding tube... She has moments of alertness, will occasionally write, some of it is impossible to understand. When trying to ween off the vent, her breathing is about 40 rpm. The DR says that this is neurological, but will cause stress on her heart. Also, she is not peeing enough, so they think that something may be wrong with her kidneys. It has been 4 months since we have seen her do anything except lay on her back, (with a stage 4 bed sore). My sister and I understand that all strokes are different, but we just want to know what to expect. Any feedback would help in our walk with this.
Oh yeah, my mom is 64, with emphasema, osteoperosis and rheumatoid arthritis.

[vja]

You are correct, all strokes are different.  I am not a medical person.  My mother also had a massive stroke, right side paralyzed and cannot speak...it has been 4 years, we have seen little improvement.  She lives with us with caregivers as I cannot stand to put her in a nursing home.  It is not easy.  It sounds like your Mom has her age going for her, the younger you are, the better the chance for recovery...my Mom is 91...was 87 when she had her stroke.  She will require a lot of sleep and I think she needs to get through the medical problems and stabilize first, before you can start any rehab on the stroke.  You are right at the beginning..her
stroke is considered "fresh"...because she is young, she has a good shot of getting some recovery out of rehab, but she has to get out of the woods with the trach, vent, feeding tube etc. first..may take a litle while.  Be sure the nurses are doing all they can for her and let her rest.  Just my opinion.

[caregiver222]

These are three things to keep in mind. (1) there is no excuse for a bedsore except poor nursing care (2) there is no excuse for a bedsore except poor nursing care (3) re-read the preceding two excuses. That being said, the care given stroke patients in many facilities is pretty crummy, with a few notable exceptions. I'm not exactly sure why that is. The standard excuse is "not enough personel", but I had a little 102 year old patient with besores (she has none now) and I solved the problem by firing 31 aides and three nurses. Years ago, I was astounded at the superb elder care being provided in an inner city hospital (that all the "best" people ran down, by the way)  by an administrator who took no prisoners and would not tolerate less than two hundred percent from his staff. A nearby hospital considered "The very best", was in my opinion a hell-hole. You are in a rough situation, and I don't have easy answers. It sounds like she should be in another hospital, but that is easier said than done, and will undoubtedly create a crisis with her current care provider. Photograph the bed sores and send two photos registered mail, one to the hospitaladministrator,the other to the hospital legal department,preferably with your attorneys return address on the envelope.

[vja]

Wow, good advice on the bedsore problem...especially the photographs. I am learning a lot from your posts.

[joesi]

Thank you caregiver222. More people need to grow a pair and speak up when these issues occur.
As you might remember, my wife who suffered a stroke also contracted a staph infection. Why? Sterile procedures were compromised continually. Fecal matter on sheets stayed for days. On and on it went... until one day, I'd had enough. Found the office of the hospital CEO. We had a "chat". I spoke "frankly" to him. By the time I got back to my wifes room after that "talk", all was fixed. They're no shy about billing for their services. I recomend no one be shy about demanding quality care. Not enough staff? "Not my problem!"