GBS recovery with tracheostomy tube

    • August 9, 2018 at 12:41 pm

      My son who is 14 months old was diagnosed 2 months ago with GBS. He was was in the ICU for 22 days, because of prolonged intubation, a tracheostomy surgery was done on him to wean him off the ventilator which was successful. But during the cause of our stay in the ward, the area where the tracheostomy tube was lodged got infected, causing a blockage in the airway. which made it difficult for the Doctors to decannulate. We had an ENT appointment today and the doctor said they will attempt to decannulate in 4 months time which is frustrating considering that he needs lots of physiotherapy and not much can be done on him with the tube on. It’s really overwhelming, I have no idea what to do to help him.

    • August 22, 2018 at 8:12 am

      I am so sorry that your baby has gone through this awful time with GBS. You must be terrified. I had GBS 45 years ago and I had a trach for 7 weeks and after trying to remove the tube it was discovered that I had scar tissue and damaged rings. I am not sure where your sons blockage is either above the tube or below, but I do not understand why you have to wait so long for a fix. I do not know where you are located but I received the best care by Dr Marc Rosen at Jefferson otolaryngology in Philly. There is a lot of good done by lasers in this area. Its is a surgical procedure but it works. I am available for any question by email or by phone. I am a volunteer of the GBS|CIDP Foundation.

      • August 29, 2018 at 6:04 pm

        Thank you for @Yadlon. I do have a lot of questions to ask. I don’t know how to send a direct message to ask for your email. Mine is hope to hear from you soon. Thank you Sir