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Thread: super sad stepdaughter

  1. #71
    He has a trach still but it's either deflated or a smaller diameter to let air pass, because he can talk. He can eat and drink whatever he wants now. He isn't on a vent, just aerosol treatments. I know his dad has set up some kind of disability and/or medicaid, I don't know the details on that. I'm sure he wouldn't get online and talk about it because he is kind of a closed person and will hardly talk to Blake about anything much less getting online. I can try though. Other than that I'm probably the only one who knows enough about this stuff to talk to you guys about it. It's so hard for me to get all the information because I am very limited on visiting now as school and work have picked up and I'm busy every single day of the week. I still find time to visit him but I can never catch doctors coming in, or nurses that are willing or knowledgeable enough about his case to talk about it.

  2. #72
    I am happy to hear he can eat and speak-if I am understanding this correctly. Is there are PT there who would be willing to show you or other family members simple range of motion for his arms? Sometimes just asking or being interested in what they are doing is all it takes.
    Take care-

  3. #73
    Meagan, great to hear he can talk, eat and not on a vent. I understand not everyone is going to feel comfortable with getting online. Can you order the free book written by the Christopher Reeves Foundation. It really is a great book-book of hope. I agree hospitals can be hard when you can only get there when the regular care team is not there. It may be helpful to drop off notes, make calls, or other type of communication when you are there, to schedule a time to talk about it. Most hospitals have SW who can arrange a family conference.
    Last edited by med100; 03-05-2010 at 02:15 PM.

  4. #74
    Meagan- There are a lot of different resources online that can help to explain the injury and everything that is going on. I didn't read every post, but can tell you that the Christopher Reeves Foundation book is great. Also, there is a Patient and Family handbook that the Regional SCI Center of Delaware Valley has posted online.

    This is an incredibly difficult injury to go through and there is so much to learn. This is a great forum to even just vent. So, keep being the advocate and try to keep the faith.

    CKF

  5. #75
    Meagan, how is your step dad doing??

  6. #76
    Sorry I haven't been on here in a while. They say his bed sores are filling in and healing up nicely. He's still on antibiotics. They ordered some new arm splints to help keep his arms straight, but they were starting to rub sores on his arms so they cut down the wearing time a little bit... That's pretty much all the new news I have. He still has the trach, but they are just using aerosol what seems like 24/7. I was under the impression he would get the trach out, do you think he will?

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