My Dad We Need Help he now has complications

    • Anonymous
      June 7, 2006 at 6:45 am

      Hi Guys, My dad has been diagnoised with some complications, staph infection, and pneumnoia. The staph is the hard one to get rid of you get from the hospital. He is being treated with the “V” antibiotic which we don’t know if it is working yet because cultures won’t be back until Thursday. He has a fever still of a 102 which they are treating with tylenol. The neurologist told my mom that they are not treating the GBS right now just the infections. Did anyone suffer from any complications while suffering from GBS? Please let us know. We are trying to work with the nurses to keep his room clean and not be abnoxious but they are slobs and dirty. How do we get our point across without them taking it out on our dad? Erica

    • Anonymous
      June 7, 2006 at 10:02 am

      dear friend,
      when my father stay in hospital, he got infections also.
      the only thing can do is chest physio, and antibiotic cover.
      the infection is very hard to be clear, because tha patient is paralyse.
      about the treatment of GBS, the doctor will choose the most suitable treatment to him.
      as a daughter, I thought I could not do anything at that moment, I really understand what you feel.
      you have already do you best. support your other family members, they are all suffering.

    • Anonymous
      June 7, 2006 at 11:49 am

      Hi Erica,

      What you describe, the fever, phneumonia, and probably MRSA infection, are quite common in hospital enviroments. They aren’t symptons of GBS, but having GBS makes you suseptable to all that. This is the caregivers biggest job, keeping the staff on track. A person has to realize that GBS causes damage, then the healthcare system does damage. Two seperate and different deals. Have to be handled different, but most, often combine the two as all GBS’ fault. You litterally have to look the staff in the eyes and tell them what you want, or needs to be improved. Start at the charge nurse, but don’t ever assume they told one other person on the staff. Because they don’t. Count the help your dad gets in a week, different people, around the clock, and communication doesn’t, and never, travels far. Then you, or someone, has to observe that things are being done. I put signage up in my room. Nurses must wash hands, and be witnessed doing it, or they wern’t allowed to touch me. Who’s paying who? That’s the bottom line, and don’t for a second think anyone is your friend that’s on staff. They will tell you anything to avoid conflict. Deflect problems to insurance, when it’s their fault, or way of doing biz, that’s really the truth. They are paid by the hospital remember. Also understand that the team of doctors has a plan for your dad. They will know he’s going to be moved to another facility, or whatever, at least a week and a half before they tell you. Legally, they have to give you 72 hours notice of transfer. They deflect conflict too. You have to ask what the plans are a doc has, or probable plans to give everyone more time to plan properly. There are no surprises in all this, but it will sure seem like it, adding great deals of frustration to everything, that’s not needed. Whatever insurance coverage he has, has a clock running at each turn. Doctors know this. Hospitals know this. Insurance companies know this. Everybody but the patient and caregiver, because we never read the darn booklet. Don’t go by word of mouth, because the service people helping at the hospital know the easiest way to extract money from insurance, and just what they can get away with. They generalize policies, where your policy may have coverage, and you loose, because that takes extra work and different words to get that coverage. Nobody is working overtime, or extra, for a person. They will take the easiest route to get threw their day. Again, they are not your friend. Hope nothing else crops up with your dad. Give him our best and let him know he is not alone on this planet.

    • Anonymous
      June 8, 2006 at 8:38 pm

      Thanks, you are right and I am learning a lot from you all. I hired a night nurse to stay with my dad, we don’t have a lot of money but it doesn’t matter it’s what my sister’s and I feel is necessary for his care right now. I am not over reacting I want him to get better and I will complain and talk to everyone until that happens. He has made some improvements and I will be right by my parent’s side until the end. He will not be alone trapped in that body without a voice. He will be a survivor of GBS and our family will be advocates of this disease!! Thank you all for your many prayers, we still need all your prayers everyday he has a long way to go, thank you, Erica

    • Anonymous
      June 8, 2006 at 8:51 pm


      My thoughts and prayers are with you and your Dad. Hang in there.


    • Anonymous
      June 8, 2006 at 9:14 pm

      Hi Erica,

      My fiance Ben was in a similar situation. He had a fever of 102/103 for three weeks (which his neurologist said was MRSA but none of his other doctors mentioned that to me) and a white blood cell count of 222,000. They tried to treat him with Vancomycin and also Cefepine, but he was allergic to both and left to fight the infection on his own. He also had pneumonia in his left lung while on the ventilator and had to go through different procedures for his lungs. Like your father, the doctors were more concerned about the other complications than the GBS. I don’t want to lie to you by telling you you shouldn’t be concerned. I think what helped Ben was a lot of praying and a lot of great doctors and nurses. His age (37) and great physical condition (wrestling coach) probably helped a lot too.

      My thoughts and prayers are with your family,