Well just an update from my last posting on Wednesday the 21st. My aunt called me and told me the doctor came and talked to her and said the neurologist was reschudling the nerve test for Friday. She also said that they were thinking that what he has might be something else based on a new team of neurologist. I know caught me totally off guard and I was mad by that point thinking how can they let my dad lay there for the last two months waiting for him to progress and then suddenly say they think it might be something else. The doctor told my aunt that she was going to call me. I left work at noon that day and told my aunt to tell her not to call me I was on my way up there and I wanted to talk to her. I got up there and the doctor came in and she explained to me that they were frustrated as well becuase the nuerologist keep rescheduling and they had to work on their time. I told her then I want to talk to the nuerologist because I want to know why they keep postponing this test and they need to know my dad is a critical case as well as their others.There was nothing, according to the doctor, that could be done until that test was performed so that they could start making recommendations and decide where to go next. Anyways, I expressed to her that my dad has been lying their for 2 months and they are just waiting to see what happens well I’m not accepting that anymore. I want something done and soon. Well she said she was going to have the nuerologist meet with me personally to explain. I said okay I also asked her what did she mean that they think he could have something else. Well apparently she didn’t explain herself right the first time. They have been treating him as being in the acute process and the new team of nuerologists said they probably need to be treating him as chronic. My dad told me in the middle of the conversation that that’s enough and I don’t disrespect him, but I turned and looked at him at that point and said no. I just expressed to the doctor that they didn’t understand my frustrations from far and I can’t physically do anything for my dad but I’m going to do everything in my power to make sure that he is taken care of. By the end of the conversation I asked my and aunt and grandma if there was anything else and they both looked and said no I think you summed it up. There was other things that I said but I think you pretty much get my point which I’m sure some of your family members have done the same. Anyways, by the next morning (Thanksgiving) his other doctor called me and said they had started him on steroids (methylprednisolone) for 5 days and that was more treatment for the chronic process and then they would slowly tapper him off of it. Well, me, my husband and my sister spent the day up there with him which he slept most of the day. When he woke up that evening he told the nurse noone came to see me and he assured her that his daughters were there and his brother came up but he slept. Well, I got up there about 10:45am on Friday and someone from the Nuerology department was starting the nerve test and I had to leave. I spoke to the doctor on Saturday and she said that the test showed that there wasn’t that much nerve damage so they think it’s just part of healing process of when he will regain movement. That’s good right?
Anyways, the nuerologist is suppose to meet with me sometime this week to explain and tell me what their plans are and answer any of my questions. Now I just wait. Last night he did really good. No hallucinations and he seemed more like himself again. I really feel that those steroids have helped in some way. One more thing I found out that he has a bed sore on his butt. Well I asked the doctor and nurse to turn him over so me and my sister could see it. It’s small, but I told my sister that we need to request to look at it once a week to make sure they are treating it. So far they have been really good about keeping him off that side as much as possible. Let me know if you have any suggestions or comments or even advice

thanks,

sabrina

I just wanted to give an update on my dad cause I haven’t posted anything since I said that my dad was talking about giving up and a GBS recovered patient was going to visit with him. Anyways, daddy was tired on Saturday when she got there and really didn’t want to speak, but listened as the family talked to her and asked questions and she also showed us a DVD about the GBS which was very resourceful and interesting so I bought it from her. It is good to have all of you as support, but for my dad it was good to actually here it coming from the horses mouth if you know what I mean. He is doing better with breathing on his own, but he was hellucinating a little on Wednsday. He told me to take his belt off of his pants and I told him that he didn’t have pants and he insisted that he did until I picked up his leg and then he said well take the belt off my shorts so I touched his leg at the top and said no you don’t can’t you feel my hand? He said take the cover off and I said no then I will see your naked body. Finally, he gave up. His legs are getting stronger and my arms are building more muscle from the physical therapy we do with his legs. I told I was going to have solid rock arms by the time he leaves there, he just smiled. I have been reading the book “Darkness is not Dark recovering from GBS” and it is a wife telling the story of her husband having it and recovering. I showed my husband some of the phrases that she speaks about the things that would happen to him. He said that’s crazy it’s almost like she is writing the book about my dad. Since all this has happened I think about all the things that occured when I was growing up that were just little things to me before and now they have become a big part of my memories. I talked to my dad sometimes and tell him “Daddy do you remember when we used to do this or do you remember the time, etc….
He smiles and I think he actually thinks about it. Now I have a few questions and want a little advice, please.

[B]QUESTIONS????[/B] I have been told 2 different things about handling my dad when he hellucinates. One was to go along with him and then the other was bring him back especially when he’s not on medication that will make him hellucinate so what are your thoughts?

Since my dad has been in the hospital he has had one plasma pheresis. It has been brought to my attention several times to inquire about the IVIG. What exactly does it do and should I inquire about it?

I look forward to hearing some of your thoughts and suggestions.

Thanks,

Hi all. Sorry its been so long since I’ve updated on my dad. I had to go back to NC and leave him and my mom in NY. Here’s what has happened…
After I left, they finished the PP which caused complete havoc on his BP, he had fevers and they treated him for MRSA pneumonia. By the following Tuesday, they performed a Tracheostomy on him and slowly weaned him from the Propofol (or as I like to call it- liquid amnesia).
I flew in to see him after 2 of the longest weeks of my life and looks alone were telling. He looked more like himself without the tube and his eyes were very clear. It was really comforting.
PT brought up a spell chart and I worked with him to spell out what he wanted. It was very hard to get it going but once we figured out a method, it seems to have worked. We created, together, a list of things he would like the nursing staff to ask him – like: are you hot? are you in pain? do you want to be repositioned? etc.
We also created a chart that indicated one blink for “yes,” two blinks for “no,” rolling eyes for “I don’t know” and many blinks for “lets start over.”
We also posted a sign to the the nursing staff and doctors indicating that he wants to be spoken to, not at.
The doctors have begun to suggest that he is no longer “critical” and can leave the ICU as soon as a bed is available in a Respiratory Care Unit. From there my mom, with help, will have to find a Rehab center that is appropriate for my dad’s condition.
As for his condition, about 1 week ago, he spent 10 hours or so off the vent but they haven’t seemed to get him back there because he is in a tremendous amount of pain and heavily drugged. He is on either 600 or 900mgs(?) Neurontin, three times a day, a Fentenol(sp?) patch and morphine as needed but no less than 4 hours apart.
The doctors are very concerned with how acute his symptoms presented themselves and have even gone so far as to say that his prognosis is not that great. One doctor said they suspect that the inner lining of the myelin sheeth has been damaged.
They have done an EMG(?) and the report showed a bit of response in his right leg and left arm that was not there 10 days ago. His left cheek tweaks a bit at his command.

It is very hard to deal with all of this, as you know. It is awful to think that this vibrant, loving, healthy man is trapped inside his body. For him to spell out one sentence (with abbreviations and us helping tremendously), it wipes him out completely. And he is terribly frustrated that he cannot communicate with his care staff unless they are right by his side.

I have tried and tried to find someone who has experienced exactly what we are experiencing and that makes it harder too- no one has the same experience. No one diagnosis and onset is the same. There is no definitive answers or prognosis. We know that he is not going to be like this forever. We really do get that. But, as you know, it is hard to see past this point right now.

OK- this is way too long. I am sorry. And I am sure I left some stuff out. I just got back home to NC and feel awful that I am not there. I know your support will help me through this and any information you have provided to me and others have definitely helped my and my family…

Thank you all for your encouraging words. I know that one of you said that doing plasmapheresis too early would offset the IVIg but they have already started it. I have to say, it is very interesting to watch. Anyway, they slowly reduced his Propofol (sedative) today and he became quite alert. He was definitely cognitive and did not seem to have too much discomfort. However, when asked if he wanted them to turn it back on- he was practically yelling with his eyes. I know he can hear us and I think that all the chatting around him was making him upset. His fever spiked tonight to about 102 but they say that it is just par for the course. They were talking about doing the trach within the next few days.

A question for those who had GBS and for those with the Miller Fisher varient (which they have discussed regarding my dad): Did your recovery go in the same order as the symptoms appeared, was it opposite, or did it happen sort-of randomly? For instance, since my dad’s was descending, will he start to feel more movement in his feet or will it be in his upper extremities?

Thanks again for all your insight. -Jam