My father-in-law's partner has Guillain-Barre - after a bout of pneumonia. It is complicated by a damaged heart valve. He has come extremely close to death three times - once when aspirating on food, and twice because of the heart valve afaik. We are at approximately the three week mark. It is nice to read here that the three week mark is often the low point.
He has been on a respirator for most of the time. Doctors indicate that his breathing has significantly improved, though he is not breathing on his own yet. They indicate that he has marginally improved in his movement, though today is not so good. The nurses indicate that some days are good and some days are not so good. Things are going to get better - right?
He is about 4 hrs from us, and the hospital is planning on transferring him in the upcoming week to a hospital about 30 min from us. I'm not sure what I am looking for yet - information is one thing.
My father-in-law has also had Guillian-Barre about 25 years ago after his brother died - no paralysis of lungs, but just about everything else. He was off work for about 2 years, and as far as I know has made a complete recovery. This coincidence has raised a few eyebrows.
We are dealing with cascading disasters. Unfortunately the partner was the primary care giver to my fil and when he was hospitalized (stress from the work of being a primary care giver is probably reflected in the length and seriousness of the pneumonia) we were the only choice to take over. To make things short, my fil fell down a flight of stairs requiring us to provide 24/7 complete care. We ended up staggering our sleeping hours as nights were worse than days. We have managed to have him accepted into a government nursing home - probably in record time - near our house and are just beginning to pay more attention to his partner. Hence joining the support group.
It's been pretty rough or as my wife says - maybe we should get real jobs like all those lazy people.