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Thread: Hope lost?

  1. #101
    Harberrat- Yea! He gets real food! Was it filet mignon? Glad he is off the vent for an hour. This is great! How are you doing?

  2. #102
    Quote Originally Posted by med100 View Post
    Harberrat- Yea! He gets real food! Was it filet mignon? Glad he is off the vent for an hour. This is great! How are you doing?
    Hi Guys,
    So great to hear something positive. I was on my way up to see him today but had to turn around. Snow is blanketing us again here in NJ and couldn't chance the trip there and back this morning, it was coming down pretty good. Anyway, they are supposed to progress on the amount of time he is off the vent until either they hit a road block or he is able to stay off all together. Fingers crossed for the latter. I have been feeling better and trying to take it easy for next couple of days until I have to return to work. Thanks for the cheers! I will pass it along to him when I see him........if it ever stops snowing!ha!ha!

  3. #103
    Quote Originally Posted by harberrat View Post
    Hi Guys,
    My Brother was able to come off of the ventillator today for an hour with no problem. He also had some diced up food to eat. Great progress for him, staying positive that it will continue. Finally some news that is not bad! Whew!
    Being able to come off the validator for one hour (with no problem) is a good sign.
    The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
    --General George Patton

    Complex problems need to be solved collectively.
    ––Paul Nussbaum
    usc87.blogspot.com

  4. #104
    My friend in NJ (Bridgewater) told me it has been snowing for two days and more expected today. I understand you have over 10 inches! Even if you cannot get through the blizzard, it must feel good knowing he is in good hands and making progress... So happy to hear this. So rest up.. take care of yourself too..Glad you will be giving him the good cheer. Can you bring in a laptop and we can talk to him directly?

  5. #105
    Senior Member
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    Aug 2006
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    Spring Hill , Florida
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    Quote Originally Posted by harberrat View Post
    Hi Guys,
    My Brother was able to come off of the ventillator today for an hour with no problem. He also had some diced up food to eat. Great progress for him, staying positive that it will continue. Finally some news that is not bad! Whew!
    Does your brother have acess to an electrolarynx?It's the the device that laryngectomees hold up to their throats or insert the straw on the end of it in their mouths so they can talk. It makes a buzzing sound but converts sounds into words. I've a ventilator user myself & I have one that I have been practicing with. I find what is called the sweet spot on my neck & press on the button & form words with my lips & the sounds come out of my mouth. It takes practice but at least you can communicate with it instead of someone reading your lips trying to figure out what your trying to say. The one I been practicing with & will soon be getting one my own is the Griffen Laboratories TruTone. To me it works better then someone trying to read my lips when I'm hooked up to my ventilator with the cuff inflated on my trache. This way I don't have to deflate the cuff on my trache & unhook from the ventilator so I can talk to someone if they come in my bedroom to ask me a question or something.

    Good luck. I hope my suggestion helps your brother & the family to communicate better while he's hooked up to the ventilator. Let me know please if Kessler gives your brother or loans him an electrolarynx.

  6. #106
    If he's able to breathe on his own, does he need a cuff in place all the time? I've used a vent for 25 years and haven't had a cuffed trach except for the first month or so. I talk regularly and have many "normal" conversations throughout the day.

    When your brother is using the vent, try having the cuff deflated. If he's able to maintain his oxygen, it may allow a barrier to be overcome.
    C2/3 quad since February 20, 1985.

  7. #107
    Harberrat, how is your brother doing?

  8. #108
    Quote Originally Posted by med100 View Post
    Harberrat, how is your brother doing?
    Hi Med100,
    My brother is doing well. I think he is impatient and would like to see more progress in the arm and leg dept. but I have explained to him that barely three weeks ago he was lying in a hospital bed on a vent 24/7. Now he has had times off the vent for up to four hours at a time. He has been eating some chopped food and in my opinion is making fantastic progress. Still having appetite issues. Not really eating lunch, but I am sure that will come. I have been a little busy between travel to the rehab, work etc.. so haven't posted much. Starting to look into post care for him. I hope there is something out there that will be good for him and allow him to continue his therapy. All new territory for my family, you know? Anyway, I wish you guys all the best and thankyou again for all of your help and support. Almost forgot, he is also talking really well. I walked into his room and asked how he was doing (expecting a nod) and to my surprise he said in a clear and concise tone " Good, how are you" I almost fell over! My heart swelled with joy. You guys were right! Small steps mean alot! Take care and keep hope.....Hope is not lost!

  9. #109
    Harberrat-Your post made my eyes tear up. Hope is not lost is right!!
    I think he is doing great, and understand the joy you described. Yes, it really is new territory for your family. We are a year and a half out and still new territory. We had a lot of two step forward one step back weeks.
    Check in when you have a chance. Wish your brother well from some friends in MN.

  10. #110

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