You started earlier than us but same thing

April 28, 2011 at 10:58 am

Sounds like we are running step for step in this race. You started 2 weeks before we did. Went through the plasma wash 5 rounds with no improvement. We are now on to the IVIG treatment. Things are moving down slowly for us. Not on a vent but he has lost arms and legs and neck. Bowels and intestines dont work but lungs are strong. I keep waiting for it to hit bottom so we can focus on the long ride back up. I dread walking into the hospital room every evening to see what muscles are gone now. I usualy hear from him by this time but I have not today. I have to wonder if he can not put the phone to his ear today. Its a big fast game of wait and see from what Ive read. Just hang i there. I like the one post about not letting them see the stress we carry. I can tell you find the small little silly things to get you through. Look close and what he is not telling you that give him comfort. It took me a week to figure out why he looked at my feet everyday when i came in. He listens for my shoes to click clack on the floor as I come down the hall. ( I always wear heels) so now rain or shine I have a pairs of super high spiky heels what I keep in the car and change in the elevator just to see him smile. Good luck hang in and keep us updated.