Saturday, August 8, 2009

8/7 Amazing message for us from a new friend

Hi, I am a TBI survivor, tomorrow will be 4 years. I am so sorry what happened to your husband. It is like swimming in wet cement right now for him best words I can find. I am a bit overwhelmed with sadness right now and can not stop crying. I just wanted to tell you that I am here for you. I can answer a few questions that you might have as no one knows what its like to have tbi unless you have it. Every tbi is different but there are some thins we all experience same. He is as a child now, and if you look in his eyes you will see the innocence. All fresh tbi's have it. Although he is in that way he still must be respected. Its a double edge sword as you will find out. Dont forget to take breaks yourself cuz when he comes home and there is no more hype, things will be different. Keep you healthy so he can stay healthy :) Please be patient with him also because he has no sense of time at all. Just live in the moment is the best. May the Universe hold and comfort you and guide his energy to its new awareness now. All There Is(God)is love, and love is All There Is(God)


  1. "Be patient because he has no sense of time"...Yes! Chuck is indeed 'living in the moment', something all of us can learn from and challenge ourselves to emulate.
    Sending love~~~~Now.

  2. Hello dear Auburn, I am having trouble sleeping so I thought I would make a post for you and Chuck. Im having a little trouble navigating the site so I hope this is in the right place :) I did read the posts from daughter Shelley and your update with department heads. Just a couple thoughts to share with you. You are concerned about trach not coming out and I can understand your concern but here are some other things for you to consider. Although it does pose risk of infection and pneumonia those can be combated if he gets his aerosols and suctioning when he supposed to. Also, him sitting up does wonders to help with the pneumonia. Also do not let respiratory therapist reuse mouth piece and tubing even if it does have "only his germs" on it. They will try to convince you its ok but stand your ground. The reason they are not rushing to take the trach out is many reasons. You do not want them to take it out only to have to intubate him again. The reason he is breathing so strong is because of the aerosols. The medicine in them is what is helping do that. That is a good thing, but at the same time the Drs want to make sure that the part of brain that sends message to breathing is healed enough to take it out. Another thing too is make sure head of bed is up some so he isnt laying flat when he sleeps. In the beginning we sleep alot. I think it is the brains way of healing itself. You can be talking to him and next thing you know hes asleep the brain makes it happen when ever where ever.Maybe its a good idea for you to watch him and look for the clues he gives as to when he is tired. I know it is frustrating but remember, live in the moment and be patient. You can not let yourself think of what ifs, or too far into the future. When things are ready to change believe me they will :) I also read Shelley's post and she said when they prayed he had tear come down face and that he could do simple commands to communicate. Communication for us tbi's in the beginning is hard, actually always. He will find a way to let you know his needs. If too much comes at him at one time he will become overwhelmed and brain will just shut down, go to sleep. Although he sat in front of tv and appeared to watch game, believe me he can not focus for long periods of time yet. That is good he felt comfortable putting legs up. When he thrashes in bed with legs it is most likely frustration or anger finding an outlet. Redirecting like you do to do excercise is good thing. We have no short term memory even after 4 years mine is no good. In time as his brain heals he will go thru the 7 stages of greiving, and not always in order listed. You also may go thru them too and that is normal. I just wanted to throw that in there to remind you that you are human too and you are going thru this with him. You may find one day he may go 5 steps forward only to go 10 backwards the next day and that is ok. It is the process of healing, the nice thing is that we get to try again :)Healing a tbi is a long and slow road. It will get better I promise you. I hope you both had a good day. I mailed you a couple websites where you might like to check out. Take care Auburn <3 Your friend C (Dont forget to eat :)