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    I need answers

    My husband will be 2 years post SCI on 2/2/05. He was injuried at C-3 to C-7, but recovered to a C-6. He developed a pressure wound in August 2004 and has been in bed since. On Nov 13 2004, he aspirated his breakfast and developed a bad pneumonia that almost killed him. He is now at home with a trach and oxygen during the day and on a bi-pap machine at night. He will not eat much and he is getting more breakdown. His immune system is already down because he had MRSA, then pseudomonas, and now Ecoli in his wound. He looks terrible and I am afraid he is going to die. Has anyone ever been through this before as well and please give me some input or any suggestions. Thanks...Heather

    #2
    im really sorry to hear that.... sounds like he should be in the hospital getting an i.v. of highly strong antibiotics to fight the infections off.
    Blah

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      #3
      Where is the wound located? I would think he needs IV antibiotics as well?
      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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        #4
        He has been on vancomycin, tobramycin, levaquin, etc since August. He was hospitalized on Nov 13 when he developed pneumonia and came home on Jan 6, 2005. The doctors said that the antibiotics probably won't help much since he has been on them for so long. the wounds are located on the sacral area with stage 2 ulcers. one on his left buttock and one that is beginning on his right trochanter area. He is turned constantly, but without proper nutrition, i feel it is a lost cause. He seems so far gone and I am terrified. The doctors just go with the flow and not telling me much.

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          #5
          Things are looking grave but there are therapies that could be tried. There is a drug call oxandralone (Oxandrin) that could stimulate appetite and nutritional balance. You might also want to have him evaluated for depression. If he is depressed (and he has good cause to be) one could try a drug called mirtazipine (Remeron) that stimulates appetite and helps with sleep as well as reducing depression. I hope you have plenty of support for yourself because this must be hard for you too. You may need help just for yourself.

          RAB
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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            #6
            What type of bed is he on?

            If he is not eating, and has a very low albumin, then tube feeding may need to be considered.

            What is being done for his pressure ulcers?

            Does he have a good SCI physician or a SCI clinic he can be seen in? He may need to be hospitalized again in a specialty wound care program to get him built up and appropriately treat his wounds.

            (KLD)
            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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              #7
              Hi there HB:

              I strongly encourage you to join this group:

              http://health.groups.yahoo.com/group/scic/

              They are a wonderfully smart, encouraging, and resourceful group of family members who have been through exactly what you describe and more. They will help you with advocating on behalf of your spouse, for that sounds like what needs to be done. They also have resources for most every state, for assitance and respite for you. Many have unique and uncommon suggestions for healing wounds and encouraging appetite. Please sign up and share your situation, I know you'll get some assistance.

              My thoughts and prayers are with you both,
              River

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                #8
                He is on a pressure relief mattress and we have not been able to find an SCI physican in our area. He has a feeding tube, but doctors will not give him the feedings due to the wounds and how the feedings cause constant diarrhea. He takes periactin 4mg qid for appetite, but it does not help, he has also tried megase and marnaol(they do not work either) and I have done everything I can for him, not only that but the without the oxygen his pulse ox. drops in the 80's. He also goes into these very deep sleeps that you cannot wake him from. It is getting so scary and I feel that me and my 2 small babies are watching their dad & husband slowly die.

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                  #9
                  I'm not a doctor or nurse or understand your insurance situation but it sounds to me like you need to get him to a hospital as soon as possible and let the professionals get him stabalized.

                  Nurses - any reason why HeatherBug couldn't just bring her husband to the hopital or call for an ambulance that you can think of?

                  Steve

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                    #10
                    I still say get him in the hospital asap! demand some help
                    Blah

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                      #11
                      What type of "pressure reducing" mattress is he on? There are many, and many are totally worthless.

                      I don't understand the physician NOT giving him tube feedings due to his wounds. He needs to be on the tube feeding specifically due to the fact that he has wounds and is not eating. The diarrhea should be explored more. It can be due to the wrong type of tube feeding or to c. diff. infection of his bowels (which would be my first suspicion since he has had a recent critical care hospitalization). Diarrhea can be contained by pouching the bowel, or if needed, by use of a temporary colostomy. This is often done in extreme cases in the hospital when it is interfering with skin integrity or wound healing.

                      I would agree it sounds like he is too sick to be at home at this point. Get a different doctor, take him to another hospital, whatever it takes to get him more appropriate care than you are able to give him at home. This is beyond a family caregiver's abilities and skills, even with periodic home care nursing support.

                      Oxandralone works differently from the meds you mentioned, but must be combined with a nutritional supplement. It does not really increase appitite that much, but does help to heal wounds, so often a 6-8 course of this drug must be combined with tube feedings.

                      (KLD)
                      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                        #12
                        I'm recovering, I sat on a wound to finish a semester of college. Ended up with stage 4 osteo w/ mrsa. Vancomycin cleared infection and wound is almost healed thanks to KCI wound vac and hyperbarics. Its a necessity to clear infection cause the wound wont heal or if it does it will eat away and break down again. Oxandrin helped tremendously w/ vitamins and high protein diet. It had taken me 1 1/2 months to have it close to healed. Get to the hospital and dont lose hope, you've already made it this far.
                        Hope is a good thing, maybe the best of things, and no good thing ever dies...

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                          #13
                          unfortunately in my experience getting a good or new bed for home is better than a hospitol bed. I never even when i got a stage 3 pressure sore did i get turned every 2 hours at either rehab or trauma recovery hospitol. MOst of the evening nursing staff in my expereince just odn't care. Even if i tell them i'ts mandatory i be turned. Family however usually care for you and turns you on the button.

                          I hope he gets better. I dont' know of anythign else to say.

                          Comment


                            #14
                            Varian, sorry you had such a negative experience. This would not be true if you were on my unit. If you do not get the care you need, there is a chain of command to follow: first speak to the RN responsible for your care team, then to the charge nurse on the shift, then to the head nurse, and then to the supervisor or director of nurses. All hospitals are also required to have a grievance procedure, usually through someone like a patient representative or advocate.

                            It is easier generally to be put on a specialty mattress or bed in the hospital than it is in your home, as many are more available in a hospital setting. In addition, it sounds like this man needs IV therapy, respiratory therapy, and other treatment that may be beyond his family member's abilities or skills to provide in the home.

                            Heatherbug, can you give us an update?

                            (KLD)
                            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                            Comment


                              #15
                              Originally posted by Varian:

                              unfortunately in my experience getting a good or new bed for home is better than a hospitol bed. I never even when i got a stage 3 pressure sore did i get turned every 2 hours at either rehab or trauma recovery hospitol. MOst of the evening nursing staff in my expereince just odn't care. Even if i tell them i'ts mandatory i be turned. Family however usually care for you and turns you on the button.
                              I got similar experiences with numerous hospitals here...be it with bedsores, bowels etc. My insurance will not pay for my attendant if I'm in hospital...

                              Finally IVAC bought me gel mattress so I dont develop sores on back & butt since...It might be a great solution for you to get special mattress (in my opinion better gel than air pump)

                              KLD -I 'm not sure what unit you work in (must be Cookoo Nest[img]/forum/images/smilies/smile.gif[/img]lol) , but going thru chain of command in hospitals with complaints never worked for me or anyone I know.....



                              http://stores.ebay.com/MAKSYM-Variety-Store

                              [This message was edited by Max on 02-06-05 at 06:07 PM.]
                              http://stores.ebay.com/MAKSYM-Variety-Store

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