First of all, I'm very sorry to hear that your father is suffering. He is lucky to have you. GBS is something I would not wish upon my worst enemies. I had an extreme case of GBS in my junior year of high school, back in 2009. I was on a ventilator as well and was fully paralyzed for quite some time. To this day I still panic every time I get even a little sick, as I remember how quickly I spiraled. I do not know what brought me to find this site. I never heard of it before today. I just hope your father knows he is not alone. It brings tears to my eyes to feel what he is going through. I can, however, tell you that no matter how hopeless it feels, there is such hope for a full recovery. I was fully paralyzed, unable to move anything except my finger (less than an inch, and I had barely any control) when people put it on their palms so I could try to spell letters. I could not breathe, eat, drink or get up to kill myself which was a dark fantasy I had at the time. My eyeballs have scars from drying out. At my darkest moments I begged anyone in the room (painfully slowly, trying to spell out the letters with my finger on their palm) both nurses and my family, to kill me. They declined of course and somehow, by the grace of the gods above, I am here to tell the tale 10 years later. I am still figuring out how best to help people in this life as I deal with intense PTSD symptoms. I made a full recovery except for the left half of my lower lip which no one can even notice. Even that has improved. Perhaps I found this site on this late night for a reason. If you or your father need to talk to someone or ask questions, my email is verymerrymartian@yahoo.com. It might be helpful for both of us, as I still search for meaning in an experience so traumatizing. My high school put me in their news video back in the day. It was heavily edited and totally embarrasses me but it may be helpful. Here is the link if you are interested: https://www.youtube.com/watch?v=PzrWxXpcPbs. The segment about my illness starts at 3:36 in the video. I will be keeping you all in my thoughts and prayers. To you all I send the white light of healing.

I had Guillain Barre when I was a teenager. I am now 69, so you can recover.
I even became a nurse, partly due to this experience, and worked 45 years.
It was a terrible experience but it made me a better nurse. I can imagine how your Father is feeling.
There is no way to explain paralysis. Going septic with pneumonia is a very serious complication and should be taken seriously. I was young and healthy before the GBS so was the best candidate for recovery. Does your Father have Advanced Directives written? You can tell him that recovery happens, but not always a complete recovery and it would be slow. I am just being honest, as I always was with my patients. If your Father has a faith, talking to someone, a Minister or Rabbi, privately might help guide him. It is awful when you cannot do anything for yourself. He needs to know he is still involved in decision making otherwise it will lead him to despair. Just provide him with the best care possible. What helped me the most was that family and friends stayed with me around the clock because I was scared being unable to breathe. I am sorry your Father is going through this and that you are also hurting for him. I do not mean to discourage you but I don't know his age.
You sound like a wonderful person caring for your parent this way. There are support groups all over the country and even beyond the US. Often times there are former patients who visit people in the hospital. Look at this website. https://www.gbs-cidp.org/support/chapters/
Please keep posting so we can follow how you are doing.

Thank you. He is 69 and improving. Breathing on his own some hours a day and infections clearing. But a long road ahead!!! I appreciate the insight.

to gbsgene- That is great news that he is able to be off the ventilator for several hours each day. I did not know what hard work breathing could be! The muscles above my lungs near the shoulders would really hurt like when you exercise and use muscle you have not used for a long time. I do encourage you to look at that web site. There is a tremendous amount of accurate information on it. It did not exist when I had GBS. My Mother and I went to a big meeting in Seattle once. It helps to find out you are not going through this alone. There are special groups for pregnant women and children. Those groups made me especially grateful. I think of you and your Father every day . He is the same age I am and I am very healthy now.
Please let us know how you are doing.

Thank you, I will share this with him. I joined the support group and look forward to hearing from them. I used that website to find I formation as well. Dad is up to 8 hours a day breathing on his own and is making small strides with physical therapy. We are still facing limited communication and movement, but hoping for strides soon. For the last four or so days he’s been off nutrition due to nausea and vomiting and was getting no sleep at night, leading to him becoming very confused. Two nights ago I was with him and he spent the entire night begging me for food, water, to take him home, to help him get up. It was terrifying and exhausting. Yesterday they finally put him back in the feeding tube and gave him something more effective for sleep, so we hope this will make a great difference. We are still working hard on a transfer to Hopkins as we know they have experience with GBS, which our current location does not. Again, thank you!

gbsgene,
Thank you for this update. You are such a good daughter. It sounds as though he is at that point where he takes 3 steps forward and one step back. Yes, wanting to go home is very common and it was what I asked the doctors every day. Actually I barely whispered due to being so weak. You are probably already doing this but I would talk directly to his medical insurance, which would be Medicare and maybe an Advantage plan as well. My approach is that if you get the right and best care at the start it will actually help avoid problems and also help with recovery. You have figured that not everyone knows about GBS and he needs a specialty center. If there is a Social Worker, they can do some teaching for the staff about what the patient and family need for support. Maybe print off the information from the website and ask their charge nurse to show it to the nurses.
My prayer is that the most compassionate and knowledgeable nurses, respiratory therapists and doctors walk into your Father's room. Also that you can get some sleep.
I do not want to keep anyone else from commenting. My experience is unusual and I really don't know everything, only my experience.
We all are in this together.

to GBSgene
Have not seen a post for a while. I think about you and your Father often.
Only share if it would be helpful to you.