terrified and questions

Anonymous
June 1, 2007 at 8:57 am

Hi, He can walk a little and then he gets tired. Of course this is with the help of a walker and his Pt. He still gets very dizzy when he stands up. My dad will be 63 in August. You know he says he has no pain, so we don’t know because with this we have all read there is pain. Two hospitals have diagnosed him with this. I met his doctor the other day she is very young and doesn’t seem to know how to deal with this. I will check in when I go this weekend with the doctors. Thanks, Kim

terrified and questions

Anonymous
May 31, 2007 at 6:45 pm

Hi, They sent him back to Placerville last Friday. I saw him yesterday and he has a trach and they taped open his eyes so he could see a little. He sat up in a chair about 2 hours and then was ready for bed. They were able to unrestrain him and he was a lot calmer. They resp therapist took him off the vent for almost the whole day, and just gave him oxygen and his breathing was doing great. They don’t think his breathing is the problem it’s keeping the airway open because of the amount of secretions in his mouth, throat, ect… He was able to suction his own mouth yesterday,but needed help with suctioning his trach tube. He is really getting bummed about not seeing huge improvements. I told him about this site and that there are so many great people praying and thinking about you, I also told him I am getting a lot of info to share with him. He wants to see the grandkids very bad. So, we are going up on Sunday to see him again. Thanks, Kim

terrified and questions

Anonymous
May 29, 2007 at 11:01 pm

Okay heres an update….. Any advice for the doctors ect would be of great help.Well yesterday was a great day for my dad. They took the tube out and off of the vent. He was sitting up in a chair. Laughing and talking up a storm. He even went for a short walk down the hall. Now today they are checking him again for pneumonia and had to put him back on the vent because of his breathing. They are talking about a tracheotomy, and they had to put restraints on him because he is trying to take tubes out and get up and leave. He also didnt know where he was today and was not coherent… It has been about 4 weeks in the hospital now. Is this normal what he is going through. Again, any information for the doctors or nurses would be great.

Thanks, Kim
P.S. I am going to visit him tomorrow.

terrified and questions

Anonymous
May 28, 2007 at 9:24 am

Okay I will look that up about the mold. My dad was very tired yesterday, but still very responsive. He was off the vent for almost the whole day and if he did okay they were going to take it out today. He has been on it for almost 2 weeks now. The nurses all said he was doing great for all that he had been through the last 4 weeks. He keeps trying to open up his eyes to see me when I am there, and will smile. So, I think we are only on the up hill from here like people have been saying. Thanks so much for all the information.

Kim

terrified and questions

Anonymous
May 27, 2007 at 10:03 am

Hi Everybody,

You all have been so great. I am going to see my dad today, and I hear he is doing much better. I know we may not ever find out what brought this on, but I have been doing some research on the net and found that some molds could bring this on. Has anybody heard of this, and what should we do if we suspect that this is the cause? My dad just recently the last 12 months remodeled 2 homes.. I am just concerned if this is the case for him to go back until the home is tested. Any advice would be great. I will give you all an update tomorrow about how he is doing. I hope everybody has a safe and good Memorial Day!!!

Thanks, Kim

terrified and questions

Anonymous
May 25, 2007 at 9:17 am

That is interesting! Thanks for the support. I have told my dad about this site and told him that you all are thinking of him. He gave a thumbs up!! Thanks, Kim

terrified and questions

Anonymous
May 16, 2007 at 2:41 pm

Hi Everyone,

I just love this site. Well, my dad is now at Stanford. It is a great hospital with more experience in GBS. The doctors said yesterday they think he has the Miller Fisher variant to GBS. Due to the problems starting from his head. He is able to respond to the doctors. Yesterday he even tried to open his eyes. I try and see him at least once a week, since he is over 2 hours away now. He is still fighting the pheomonia infection and on the ventilator. I was looking at the main forum on the Things to know, but at times he seems to be very upset and he will begin to get tears after frowning and attempting to move. They are talking now about doing the Plasmapherisis. They did the IVIG for about 10 days off and on. Yesterday i just told him I wanted to hold his hand and he nodded yes, and then rubbed my hand. Thanks for all your posts and information. Kim

terrified and questions

Anonymous
May 14, 2007 at 10:31 am

Hi Everyone,

This forum has been a great place to get some reassurance. I was finally able to be an advocate for my father this weekend. I went to see him Saturday and he couldn’t talk, his eyes are now closed, he was not co-herent at all, and he was gasping for air and they had to suction his mouth every 30 seconds. I requested the doctor come and see him immediately, and that he be moved to ICU. They finally did that and he now has pneumonia really bad and they had to put him on the ventilator yesterday. He is heavily sedated at this time , but the hospital is trying to stabilize him enough to transfer him to Stanford Hospital in Palo Alto. Any Advice would be great. Thanks, Kim

terrified and questions

Anonymous
May 11, 2007 at 10:57 pm

Hi Everybody,

Well, no improvement at this time. They are doing a second set of the IV meds. He is getting very depressed. It’s been 2 weeks almost in the hospital and he still can’t eat, see or walk. Now he is having hallucinations. Is this normal for this? Please any advice would be of great help. I am going to see him tomorrow. Thanks, Kim