Update on Peter as of 8/21/06

    • Anonymous
      August 21, 2006 at 1:39 pm

      9:30 AM Monday 8/21/2006 [B]Please post any thoughts or information based on this update and thank you in advance for your replies[/B].
      Nancy
      Castle Rock, CO

      “Peter had a restful night, though he continues to need more sedative to keep him sedated than the average patient No surpise there.

      However he does not show any significant improvement in any of the muscle areas affected. So, the present view forward is that his recuperation may be longer than the norm. While we still pray for and watch for speedier functional return, he will be having a tracheostomy and feeding tube this morning. While this seems a bit invasive, in reality it should allow for better support, evaluation and range of treatment options. It should also allow for Peter to function on a lower level of sedation since they will not be trying to protect the feeding tube running down his throat. All in all, medically advisable, and hopefully friendlier to his whole person.

      He will not be able to speak initially, though if the need for a tracheostomy persists a different type that allows for some airflow over the vocal chords can be gone to later. He will be able to mouth things so we may improve in our lip reading skills!

      Good reflections on Psalm 21 this morning

      Thanks be to God, His love endures forever”

    • Anonymous
      August 21, 2006 at 6:28 pm

      Nancy,

      A quote from the Summer 2006 GBS Newsletter, called “The Communicator”.

      [QUOTE]
      Symptoms stop progressing, often within 2 weeks, and usually not more than 4 weeks. After a period of weeks to months, patients then begin to experience improvements.
      [/QUOTE]

      I write this because Im not sure what kind of information is being given to his parents. It could take 4 weeks for him to hit ‘his’ bottom, but then again it may not. After that, there may not be any sign of improvement for a while. What has to be understood, is that even though he is having plasmapharesis, he wont show signs of improvement straight away, as it is not a medication, just something given to try and stop any further damage being done. He has youth on his side, which I had too when I had GBS. Once he has reached ‘his’ bottom, it will still probably take months for him to recover. But showing improvements takes a long time, and his parents must be prepared for it, as this is ‘normal’ for GBS. I personally havent heard of any GBS’er showing significant improvement within 11 days. Everyone on the forum has a saying GBS = Getting Better Slowly, and that is truely the case.

    • Anonymous
      August 21, 2006 at 6:44 pm

      As Ali said, he’s not likely to be showing improvement this early. Be very patient.

      He’ll probably continue to sleep a lot, and will most likely have a lot of fatigue even as he starts to improve. This is normal for GBS.

      Even when he starts to improve, it’s important that he not overdo.
      Too much exercise, or therapy, especially at an early stage can cause setbacks.

      Best wishes for his improvement. Please stay in touch.

      Suzanne

    • Anonymous
      August 21, 2006 at 7:21 pm

      He is in my thoughts and prayers. Patience is the key for now.

      Jerimy

    • arlingtonal
      August 26, 2006 at 7:41 pm

      Hi Nancy,
      I’m late reading this …but since Peter can’t speak, communications is a problem, and if you haven’t had info on the subject…my family put the alphabet on a sheet of paper…..I could point to letters and my wife got pretty good at figuring out what I wanted. It is slow conversation, but some.
      Good Luck, you are in my prayers.
      AL

    • Anonymous
      August 26, 2006 at 11:16 pm

      Hi Nancy,

      GBS sorry to say means getting better slowly. I saw improvements slowly. I was over 100 days in the hospital but two weeks in ICU. Everything everyone says here is correct. I found much peace with the prayers lifted up from everyone. This is a slow healing disease. You may want to check on the site with children forum. He does have youth on his side. Everyone who comes to see him must stay positive. It is just as hard on the family as it is on him. You can’t rush therapy even though insurance companies want you too. Too much too soon can cause setbacks.

      Caroline

    • Anonymous
      August 27, 2006 at 12:02 am

      Peter is in our thoughts. Stay positive as Peter will improve with time. We all improve at different rates.

      Good luck
      Debbie