I need support

    • Anonymous
      August 12, 2007 at 2:03 pm

      Hello! My husband has GBS and has been vented for 5 months now. Chronic pnemonia is a big problem and certainly interfering with getting off the vent. Randy’s cough is very slowly coming back. He has physio every morning and has full head control and the shoulders are coming. His lower back aches a lot and his arms are starting to work a bit. His spirits are pretty good, but he is frustrated with how slow this is and how tired he always feels. We get him outside for about 1 hour most days to feel the breeze and sun. I am starting to feel discouraged, but don’t let him know that, and need help with getting through the one day at a time routine! Any suggestions?? Thanks,

    • Anonymous
      August 12, 2007 at 4:07 pm


      ask the docs if the pneumonia can be treated more aggressively. they prolly can. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 13, 2007 at 12:27 am

      Hang in there Jan!! Make sure you are getting plenty of rest yourself! I’m sure you’ve read it a lot in the forum pages, but GBS stands for “getting better slowly”. It sounds as though he is making steady progress. Something that always helped me, and still does, is a journal. I know he can’t write himself at the moment, but you can, and it will probably help you too! Write down everything. The schedule for that day, how tired or awake he feels, how his PT goes, his aches and pains that day, almost anything. When you look back through those pages in a month or so, I bet you will see some sort of progress, even if it’s small. Then on the days when he is frustrated, and there will be many, he will have something to show him his progress. My parents did this for me the first time I was ill and I must say it really helped a lot! You can also get the name of someone in your area that has had GBS to come and talk to him and that might perk him up on a tough day too. These forums should be a great resource for you also. Everyone is here for you on those tough days, and full of information that they are more than willing to share. I will keep you in my prayers!

    • Anonymous
      August 13, 2007 at 12:36 pm

      Jan I know you don’t want to see anyone frustrated but I see that as a good sign. He is feeling well enough to be frustrated. That will also help him fight this thing. As the muscles in the chest get stronger they will be able to clear out the chest which will also help. Does sound like things are progressing in the right direction. Keep in touch and if needed you can send a private message to someone on the board. Contacting someone that understand his position and yours, can calm down some of the worry. I just wish there was something we all could say to remove it completely. We all have good and bad days. That Journal can be just a calendar for you to post the brags or good things. It is very helpful if you extend that to remind everyone what can set off a flare up of residuals. Just watching a long movie or having company that stayed too long or not getting enough sleep because of a storm that kept waking you up can set us back. Just reading the posts can help let you know that you are not the only family effected with this nasty illness and that it effects the whole family and circle of friends. Keep in Touch and let me know if there is anything I can help you with. If it is to only talk or email. I am willing to do that for you! Next level of progress is they feel well enough to start to complain about everything! 😮

    • Anonymous
      August 13, 2007 at 3:39 pm

      Thanks for your responses. I do find help in ready posts here. I do keep a journal and it used to work for me to see improvment over a month, but I am finding it slow, and so is Randy, his frustration with how slow, and the lack of consistency with the nursing care is really bothering him. I would love to hear from someone who had been vented 5 months or more, and how they finally got off of it. Thanks to all I really appreciate the responses. Believe!!

    • Anonymous
      August 14, 2007 at 12:28 am

      🙂 Hi there! In regards to the lack of consistency in his care……….that should be addressed. I’m not sure where yall’ are located, but at the hospitals I have worked at here, we would have care team meetings. You should contact the mgr. of that unit and ask for a “care team meeting”. What should happen is that everyone involved in his care, Dr.s, nurses, respiratory therapists, PT, social services, and family members all sit down at one table and discuss problems, successes, and what the goals are and the time frame for those goals. You have every right to request continuity of care as far as the nursing staff is concerned, meaning they would attempt to only assign nurses to him that are familiar with his whole case, and they can also take into consideration the ones that he feels more comfortable with. This way everyone is more or less headed down the same road and it tends to improve communication at all levels. He will feel more comfortable if he sees the same faces every day. You can also request that they begin to structure his day if he tolerates it. They did this for me when I was in ICU on a vent and I really liked it. I had a specific “wake up and sit up time”. This was followed by things like getting my hairbrushed and face washed. Then I would have a small break, where everyone would just leave me alone. Then, for example, for the next 2 hours PT came by, I would have some visitors, maybe some medication to be given or ports to be flushed, and then I would have another quiet time. Anyway……….you get the picture. It was a very structured day and it was written on a big dry erase board where I could see it, and know who my nurse was for the day, and what time I would be doing everything. It really helped me feel as though I got to participate instead of just being there in the bed. It was also nice to know the 3 or 4 times per day, nobody could bug me, it was my time, and they would all have to wait, unless it was an emergency of course. The goals of all the therapy can be addressed at the care team meeting. So you could mention your concern in regards to the pneumonias, and then ask the Dr. and the Respiratory therapist what they plan on doing about it and when they expect to see some improvements. Thats the beauty of having everyone involved sit down and talk to each other.
      I’m so sorry yall’ for this “book” of a post! I really do hope it helps you in some way. I will keep you in my prayers.

    • Anonymous
      August 18, 2007 at 12:42 am

      Hi Jan, Welcome to the Family. Is your Hubby getting meds for pain control? If not, request it from his drs. Neurontin, Lyrica and antidepressants are good. Positive atmosphere is really important for a good recovery. Rest is the best thing for the nerves, laying in a bed is best. Did he get pp or ivig treatments? Continuious care from rt is essential if he has pnemonia that often. Make his feelings be heard by the entire staff, don’t wait around hoping they will notice something is wrong or not going smoothly for him, because they won’t know of the problems if they aren’t told of them. Be the loud advocate for your hubby, don’t worry about being a pest, stepping on toes or hurt feelings, what is best for your hubby is the first and most important thing to take into consideration. it just might mean the difference between a good recovery and a mediocre one. Don’t let the depression go on too long, treatment will help his attitude also. Alot of us feel the same way about how long it takes to recover, we all have to get use to a new normal and find our own limits. Recovery is a very individual thing, just as gbs is different for everyone. Its sometimes a very long, slow and hilly road, but with a good support system it is a doable road. Feel free to ask as many questions as you have or just vent when you need to. Please remember to take care of yourself also.

    • Anonymous
      September 13, 2007 at 12:55 pm

      Hi Jan, lots of people get discouraged but just the fact that your husband is making progress is a good thing. Even if its slow, its there.
      My son Nate was not vented but his progress was about right in the same timeline with your husbands. He was not able to use his arms much early on but it came back gradually, then his legs followed later.
      It will keep coming, don’t get discouraged.
      Try to remember and remind him of how he was and how far he has come. It helps. He needs to be reminded that the progress will keep coming.
      If they have him on enough meds like Neurontin, it should help his back pain.
      Nate has lots of that still at 21mos and takes 2400 a day.
      They also have him on Tramadol. It helps a lot with the pain and it does not make him dopey.
      He will get better although it is slow, he will eventually.
      Trudy, natesmom

    • Anonymous
      November 6, 2007 at 9:15 am

      [Hello: It has almost been 8 months and Randy is finally being moved out of the critical care unit and moving into the Rehab hospital in NorthBay. What a long bumpy road, but we have made it!. Off the vent 3 weeks ago and the trac came out last week. We are ready for the move, but sad to be leaving our family of caregivers in the CCU. We have definately learned a new definition of the word slow, but there is progress, and it is continuing. Randy has a power chair that he uses with head controls to get around in, and just having enough upper body strength to be able to sit on the commode and get to the bathroom for a shower is wonderful. Thanks for all the support I find on this site, it is truly wonderful.:D 😀

    • November 6, 2007 at 9:35 am

      I am so glad that Randy is making progress. One really does develop an attatchment to the caregivers in the hospital, I agree. I really do feel that individuals who choose medicine as a career truly have a calling from above. We too have been very blessed with our current hospital Rush University Chicago.

      Best wishes and continued progress
      Dawn Kevies mom