Announcement

Collapse
No announcement yet.

Quad w/stage IV decubitus ulcers-homebound ques

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Quad w/stage IV decubitus ulcers-homebound ques

    Hi. I am new to this forum. I am hoping someone may be able to help with providing information on how I may find PCA help for a friend, and also any information about home healthcare, wound care, and simply care for a young quad.

    I am an incomplete quad and trying to help my friend, a quad presently in the community acute care hospital. He has been to many hospitals, including over 6 trips to different hospitals and LTAC's and nursing homes in as many weeks.

    He is over 2 years post injury c5-complete. He has had life threatening complications (sepsis, coded several times, mrsa, etc). He has stage IV sacral wounds, heel wounds, etc. and worse, his arms have contracted against his chest, hands clawed, elbows winged. This was due to mistakes (negligence) at the hospital after 9 months in the ICU post rehab (NJ).
    Problem, it is near impossible to find a skilled nursing facility who will take him and no hospital will take him. He is only in his early 20's, verbal, bright and aware (no vent). His wings make it near impossible to safely turn him without pain, so he is staying on his wounds. They have not healed in over 2 years (some minimal stage IV healing process). One hospital even told us they will not take "some other hospitals mistakes." Another told me that wound care is expensive and let the skilled nursing facility "take him," we won't. This is so discouraging. I worry about him going to a place like a nursing home where he is the youngest, not getting turned every two hours, and infections worse (he already went through this) and dieing as a result. He needs a chance to get his wounds healed, which we understand may take another 10 months to a year. We are hoping he can come home for this healing but need a lot of help at home for this to work. He wants to be home for Christmas, so we are down to the deadline. Applied for CRPD in NJ waiver allowing up to 12 hours a day help.

    Kessler Rehab won't take him till wounds heal and he is able to sit up in a wheelchair and tolerate 3 hours of rehab a day.

    He has not been home more than two days in almost three years. He was driving a powerchair just before the admission into this community hospital where all his major complications began (contractures, stage IV ulcers).

    He needs round the clock care. Looking for affordable solutions- PCA, home health aids. We may be able to get help with Medicaid Waiver program up to 12 hours a day- need 24. Anyone know where we can turn to get more help? The local home health agency charge $25/hour so at 10 hrs a day, it would cost $3000.00 for 12 days. Anyone with suggestions? Thank you.

    #2
    Wow I wish you much luck.

    Comment


      #3
      whats you location ?

      Comment


        #4
        Thanks for the replies- He is in Somerset County NJ- Central Jersey

        Comment


          #5
          Kessler not accepting a c5?

          THAT'S JUST BULLSHIT. WHAT HAPPENED TO COMPASSIONATE CARE?

          The social workers should work out an arrangement between St Barnabas and Kessler to heal his wounds , working around his contractures and get him into rehab.
          I wish I was a full c5, geeze. This kid has his whole life ahead.
          He needs an advocate asap.
          How much worse would this be under Obamacare?

          Comment


            #6
            A 20 year old sci in a NJ nursing home?

            One of my roommates, C4, went to one of the better (stepped up care) nursing facilities in NJ after 18 mos in Kess ('01-'02) and supposedly passed away from pneumonia within 30 days. I learned this from the nurses during a later visit to Kess.
            Damn shame, and he was 50 yrs old.
            This is not an indictment of all such NJ facilities but even still, a 20 something should stay away.

            Comment


              #7
              Tim, yes , I agree totally. Kessler told me they are acute rehab and cannot take care of long term chronic wound care issues, as these are neither acute or rehab. His wounds are hard to heal. He needs so much care he is not getting. I also worry about him not surviving a nursing home. How he has survived after all he has been through, at this community Somerset County hospital, coding, stage IV ulcers, etc, I don't know. But he needs to go home with his family with home healthcare- and lots of support till his wounds heal. Better if he could be in a SCI rehab, but doesn't look like they will take him.

              Comment


                #8
                This is sad...very sad....I can't imagine a hospital or Dr. letting this young mans arms to contract as they have...daily exercise would have prevented it...and there is NO reason for his sore to become the mess it has...where is his family...no one to fight for his needs? is there no social worker or case managment working on his behalf? Does he have medicaid...I would think someone would have gotten him the services he needs...and I believe if a hospital is responsible for the pressure sores they cannot bill the state...I guess they can just throw you out?? I don't know...I am so sorry to hear this...home? does he have family? I could cry this is so tragic...you said he is verbal and bright...why did he not demand and raise hell when he knew what was happening to his body... my son was in icu for months too but was exercised daily with rom...I think I'd find an attorney...I'm sorry to seem to be ranting and not have answers to
                your question...I just want to know where this kids mama is...I'd like to kick her in the ass....sorry again...much luck in your search...

                Comment


                  #9
                  It is easy to look back on care I have had over the years and see how much bullshit I accepted because I didn't know better. At this point (25 yrs post injury), I cannot believe there isn't a 'standard of care' for pressure sores.

                  If nothing else, the standard should read "STAY OFF IT."
                  ____________________

                  "We are the ones we've been waiting for. We are the change that we seek."
                  - Barack Obama

                  Comment


                    #10
                    Thanks Mad and Flicka. Yes, there are standards for treating pressure ulcers proposed by the National Pressure Ulcer Advisory Panel (www.npuap.org) and Medicare will not pay for medical mistakes such as this anymore. The mom has been there daily. They all tried to fight the system but believed the doctor when told the patient was refusing to be turned so nothing they could do for him. The mom is a single mom and other family issues, POA, paperwork, insurance, and personality issues-stress, lack of education about patients rights, all interfered. Hospital malpractice. I can explain more...but he was certainly the throw away kid. As I was told from someone at JFK, no one wants to take another hospitals mistakes. There really are no options for him. Without home healthcare covering him 24 hours, what are his options? I have been trying to advocate...

                    Comment


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

                      Comment


                        #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!!!!!!!!!!!!!!!

                        Comment


                          #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...

                          Comment


                            #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.

                            Comment


                              #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!

                              Comment

                              Working...
                              X