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Thread: Quad w/stage IV decubitus ulcers-homebound ques

  1. #11
    how did the initial injury happen? negliance of a third party? some one may be responsible as to what happened to him.

  2. #12
    Have you tried Shepherd Center in Atlanta? They have a wound care floor. When my son was there a year and half ago, if he had any skin issues they sent for someone from skin care right away. My son wasn't excepted to live. He is in his 20's c2-3, on a vent,can't speak or eat, blind in one eye and legal blind in the other. But, I knew living here in alabama that no one was going to be able to care for him, with the extent of his injuries, so I got a tilt table and FES bike and he does 10 miles 3x a week
    and I get him on the tilt table for an hour 1 day a week. Last christmas he was on IV at home and not much improvement. This christmas no lung infection and he can move 4 fingers. I hope that Shepherd will take him and I'm sure you'll figure a way to get him there. They might even help with that. let me know how it goes. My heart goes out to him and you! ITS SUCKS!!!!!!!!!!!!!!!

  3. #13
    Thank you so much. Duji, yes, negligence by the hospital. He was in a motorcycle accident, broke c-5 quad, and recovered enough to be driving a powerchair, eating with aid, etc. Then went to this community hospital in NJ near his home, and he coded, spent 9 months in the ICU where he developed stage IV decubitus ulcers, sepsis, bone infections, severe contracture of his arms so bad there were ulcers in the crease of his arms, and guess what.. They blamed him. I just spent the weekend with him and saw a lot more neglect. He is headed home for Christmas. We have to make this work! Maryann, I also heard very good things about Shepherd. It is so cool they have a wound care floor. I am curious, what is a tilt table? It is encouraging to hear you were able to get him the care and he is improving. Fantastic! Thank you!!! We will survive this...

  4. #14
    I wish I could add something more helpful than my well wishes, but for what it's worth, your friend is really lucky to have you advocating for him. It will make all the difference, which must feel like a lot of pressure. Hang in there.

    As a last resort, there's always the media.

  5. #15
    Hi Scaper- thanks! It is frustrating but worth it. I just spoke to the hospital yesterday. They were going to ship him down to a PA LTACH without the LTACH actually accepting him. I spent 8 hours with him on Sunday along with family and friends. Not once did they move him, or change his wounds. The nurse told us it takes 4 people 1.5 hours every time they change his wounds, so they don't have time during the day to do this. I asked about him being wet/soiled and how would they know to change him if they did not look? The nurse said he would not have to go in the room, " we would know- trust me." He looked very pale, but we had a great talk about him coming home. He is very excited he will be home for Christmas. It is a struggle to get this staff on board, but I have given them a date and time he "has to be" discharged, and we will file complaints if they are not preparing a safe discharge, required by law. It would be criminal to dump him, and he has been dumped before, but not on my watch.

    I asked him if he might consider eval for surgery (tendon release) so he could straighten his arms. He does not want doctors, just wants home. I don't blame him. I believe the media will get the story, but I want to make sure he is safe first. He has not been home for over two years.. His mom and I want to have a big pizza party for him next week when he comes home with a great big welcome home sign. I hope we can get enough help at home to make this work because he is a lot of care and has lots of needs. Thanks for your support my friends!

  6. #16
    This man needs a good medical malpractice attorney, and now. I would also recommend that complaints about unsafe care be filed with the Joint Commission and your state Department of Health, if what you say about the neglect he has received and is still receiving are true.


  7. #17
    Has anyone called Adult Protective Services? This young man is going to die...I cannot believe anyone would think taking him home for Christmas and having a pizza party is a positive move...who will take care of his wounds? clean him up...keep him turned etc? Whether he refuses to be turned because it hurts doesn't matter...he HAS to get off his he at least on an air mattress? You stated earlier his mother could not care for him.....the tendon surgery is not a cure all for his contractures...and even if it were to "work" he is not in any physical shape for the procedure...the state agency that allocates(sp) home care hours have all been cut across the expect 24/7 care at home imo will not happen...I wish money was not an issue...perhaps a good story from the media will put this young man out there and an angel will step forward to help with his care...perhaps hospice would help...I couldn't agree with the nurse about an attorney, however his case would take Years to resolve...I send my prayers...he is lucky to have you fighting for him, you are a true friend!

  8. #18
    Thanks. His mom is positive she can handle everything and spoil him at home with a party, and all will be okay. Most important is his care- You got it right! We do not have enough services yet. She has to pay out of pocket for more- He is going to get 5 days a week of wound care from a skilled nurse and two others are lined up to provide home health aid for the rest. But the skilled nurse is just going to pop in and show her what to do. The mom does not work, lives at home and will be with him 24/7. He needs more than this.. he needs 24-7 trained people too. Today he did not want his PICC line, PEG tube, or Trach removed, and just wants out of the hospital and home. This is all he talks about, and getting on his computer, etc. There is no place for him besides home. This is the horrible truth. No nursing home will take him, or LTACH in NJ. Kessler refused him again.

    I told the case manager he probably did not let his doc remove the PICC line before he goes home because he does not trust him or this hospital. She told me I was wrong. When I explained he received the stage IV bedsores from this hospital and severe and permanent contractures, she denied this, claimed it was at a different hospital. When I told her I was with him and saw it happen, had proof, she called me "hostile" and told me if I want to continue talking or advocating with them as a "team" I cannot claim this.

    Of course, I will do what is right for my friend, continue on my path of honest straight confrontation when needed, and advocacy, and I don't give a $#@ about this person's "team" approach. The real issues are as stated above. Who is going to care for him at home, will he get enough care at home? He is going to come home, the mother has arranged for two home healthcare aids, as well as skilled nurses at home.
    The case manager made me laugh when she told me how many hours they were working on the case, and then could not answer simple questions like, who did you call for VNA, other home care services? We need to get him out of that hospital ASAP. I called and filed a complaint as of today to one of the agencies mentioned. I was told the mother POA, has to do this, so we will be working on it together. I just wanted to add the mother is competent, just simply overwhelmed. The grandmother was the one who did not want him there due to her own personal problems. But the mom has been with him daily, and took "training" today to care for him. The case manager told me this was sufficient...No matter what, I do believe he is better home if and when he gets enough home care services, and this will have to be paid out of pocket. I am contacting another funding agency to see if we can get funds to cover his expenses ASAP. I just cannot stop fighting for him and have spent all my free time looking for services for him. I had filed complaints to the Dept of Health last year when he was first injured, and they did nothing, as far as I could tell. They told me they just looked at the medical chart, did not see much about his contractures or wounds, and saw it was a 'behavioral issue" ... in other words, they did not investigate.

    I am going to talk with another attorney tomorrow and get some consultation. His Medicaid waiver will kick in January 1st or 2nd, allowing up to 12 hours a day of homecare.

    I decided to give Hill-ROM a call. I contacted the local rep, who proceeded to tell me they cannot just order a Clinitron bed for home, it has to be "pre-approved" by Medicare. I told him he is on a Clinitron at the hospital. He told me home rules and hospitals are different. Then told me they normally tell all woundcare patients they have to try a more "conservative" approach of an air mattress on a regular bed, and if their wounds get worse, then they give them a Clinitron. I recited the Medicare guidelines for the third class, and told him this is not true. So he is going to check into it. So yes, a ton of barriers. But I do believe home is better than this horrible hospital...

  9. #19
    To add, the complaint to the Joint Commission is another very good one- as well as to his insurance companies...Thanks. I just wonder if these agencies really do much of anything helpful..I wish I were there to help him more. He told the nurse I saved his life when I got him out of there...

  10. #20

    I would suggest contacting Kevin Hoagland, President of The Central Jersey Spinal Cord Association. He may be able to help out. Email me for his contact info-

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