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Thread: super sad stepdaughter

  1. #61
    Gosh, I am not happy about what I am reading. Stage 4 decubitus ulcers are very serious and the infections can be life threatening. I realize this has been discussed, but it is not something hospitals, ICU or others, have been able to safely accomplish for many SCI patients. The stage 4 ulcers sometimes take up to a year or longer to heal, may need surgery for flaps, etc. Sepsis and osteomylitis are bad. The contractures of his arms (and possibly legs) can be so rigid they could get stuck in one position and never be able to extend.

    Any way to get him out of there to a rehab? I realize in NJ, the SCI rehabs will not take wound care patients, and assume it is the same in TX. Splints/Bracing for his arms so they can stay straight is something that should be discussed with his PT team.
    The spasticity and increased tone are due to lack of range of motion. If they kept his arms and legs moving, his arms in splints, at night, kept him dry, kept him on a appropriate mattress (Clinitron, low airmattress, etc) this should not have happened to him.

    Once his arms contract (gets stuck) in those horrible twisted positions, it is difficult or sometimes impossible to undo the damage. I have a friend who is in the ICU For 9 months, developed stage IV ulcers, and such severe contractures of his arms, they are stuck out to his side. Surgery may not even be able to allow him use or stretching of them. He also developed stage IV ulcers where part of his but was missing.. terrible. He also developed a serious blood infection called sepsis and almost died several times. Sounds like Blake has a bone infection, which is serious. If they are not doing turning him, no matter what his breathing is, they have to figure out how to turn him without changing his BP/Breathing... or send him to an appropriate SCI rehab that can. Sounds like after the damage is done they are doing PT and turning him. Not sure this will cure the issues at this point, but may help prevent further damage. My guess is they are wanting to push him out, now that these new conditions have been caused. Many hospitals and nursing homes/rehab centers will not take others mistakes or errors, fear of liability. Please so push for them to keep turning him etc. Get photos of his bed sores.

    I agree with Betheny, get whatever materials you can to him so he can be his own best advocate. He needs to demand for them to turn him every two hours. Possible a SCI nurse can comment more here or someone with more helpful info.

    Medicare has already sent out memo's in 2008-2009 they will not pay for decubitus ulcers (pressure sores/bed sores) caused by a hospital as they believe with appropriate care, they are in almost all circumstances, preventable. Please keep writing and we can share what we can do, but please make all the calls you can to get him into a better SCI center.
    The Christopher Reeves Foundation will send you the book free of charge.
    Last edited by med100; 03-03-2010 at 05:44 PM.

  2. #62
    I feel like he may be at even more risk in the rehab. Back in 2000, my roommate would need help with her vent and staff would take forever to get there. So many times I lay in bed hollering and screaming while they ignored her alarms...They were understaffed then and I doubt it's gotten better. Someday I'm going to visit other rehabs to compare to TIRR. I know it is said to be good but I have my share of horror stories.

    Do they have him on one of those circulating beds? That's the first line of defense imo. How are they treating the osteomyelitis?

    med100, am I reading you right? Do you also feel a little suspicious of the claim that they couldn't prevent this sore b/c they couldn't turn him? What's done is done, but steps need to be taken to ensure they help him heal asap now. I feel like someone might need to be held accountable personally, b/c sores ARE preventable, it's just a labor-intensive process that hospitals all too often ignore until it's too late.

    Agreed w/ med100, you need to prevent his arms contracting. Our arms want to draw up-my OT called it "seal arms". They draw up like flippers. That happened to a friend in a nursing home. All of this stuff is preventable but almost irreversible once it sets in.
    Last edited by betheny; 03-03-2010 at 05:41 PM.

  3. #63
    Betheny, I am totally with you 100%.. yup, that is my claim. I do not believe they could not turn him. I am very upset because I have seen this too often.. neglect. I am so sorry... just do whatever you can do. The SCI rehabs are the way I would go, although the nursing home rehabs by my experience, will not help him, as they do not have the staff or training. He needs a very strong advocate and a lot of education so he can become empowered.

    Here is info on bedsores and rather graphic pictures

    Here is another link for you.. It has to do with his insurance. If he is in the hospital and does not have health insurance and low income, then I can be pretty sure he has institutional Medicaid. Here is an older article about them clamping down on pressure sores acquired at the hospitals they call "never events." It won't change anything, just for your information as you may be able to use this at your hospital to demand answers
    Last edited by med100; 03-03-2010 at 05:57 PM.

  4. #64
    I feel like their claim of not being able to turn him is BS too, I think they were neglecting him. A lot of times he said he couldn't get help in the middle of the night and sometimes during the day too. He can't push a call button so he might yell as loud as he can (which isn't very loud) but if they're not checking on him often enough they'd never know anything. I don't have pictures of the bedsores. Am I allowed to take pictures of them with his permission? The nurses were telling him that I can't because of HIPAA but if he gives me permission then it's not an invasion of privacy. I know they're supposed to take pictures of it themselves so they can keep an eye on the progression of it but I don't know if they have been doing it or not. Can I just request to get copies of those pictures? Who do I need to speak to to get copies of the pictures and possibly x-rays?

    He is on some kind of air mattress, I'm guessing it's a circulation bed, it doesn't have any sheets so it can breathe. He has a wound vac and they are treating the osteomyelitis with vancomycin. The bedsore is pretty huge, and some are starting to develop on the thigh area too They are going to get his nutrition level up and then evaluate him for a flap procedure in a few weeks.

    About the arm situation, that really upsets me that they would let his arms contract like that. He does get some physical therapy, and the lady who is in charge of it seems to care about him... he has some arm braces that go up to the forearm but they haven't been putting them on him lately. I think he needs some that go past the elbows to keep his arms straight.

  5. #65
    You certainly can take his picture, with his permission. HIPAA has nothing at all to do with what relatives can do. Sounds like the nurses don't want you to.

    Take the pics when they're not looking. I don't know if they could try to invoke some hospital rule or something.

    But not HIPAA. In their (very slight) defense - I've found many healthcare workers don't really understand HIPAA, and err on the side of caution (thinking even silly things might violate it).

  6. #66
    Call buttons that he can use do exist. I had to operate mine w/ my teeth for ages, but I could get it to my face with my paws. My roommate, a C2 injury, had a great big one they velcroed to her pillow. She could turn her head to push it w/ her cheek.

  7. #67
    In ICU after my husbands accident he had a call light that sat on his pillow by his shoulder. If he shrugged it would click and turn the light on. It slid down and caused many false alarms, but was better than nothing.
    When he was back in the same hospital this summer we asked if they had a sip and puff call light like he had at Craig Hospital. By puffing into it the call light would go on. They had one all along, but so seldom used that no one knew anything about it when he was there after his accident.
    Most of the staff did not even know what it was when he first got it. It just took asking the right equipment tech at the hospital.
    Wishing you the best.

  8. #68
    Yes, you certainly have a right to take pictures of his sores if you are doing it for him, and with his permission... The hospital also should be taking photos (for his records) of all of the stages of the wounds, their treatment of it, measurements included. You can ask or if you need to, demand that they help you with these pictures.

    I remember advocating for my friend in the ICU for 9 months. They also did not have a call button for him. They are required to have one, an accessible one. They told me that he was not comfortable with the ones they had, so they did not give him one. I bought him a dinner bell, which he hit with his "wings" to get their attention. Just the mere fact there were other people watching and "noise" about no way for him to communicate he needed help, got something which worked for him.. a call button he could hit with touch.

    Linda, that sip and puff light sounds very cool.

    Blake sure should not be contracting like that... it is very serious. Can his arms stretch out fully now or is he stuck in a contracted position? Did the PT people tell you why they are not putting splint/bracing on him? Does he have heel boots or any way to keep his heels off of the mattress? Can you find out what type of bed he is on? Usually, the insurance first pays for a low air mattress, and after a one month trial, can upgrade to a Clinitron if have stage IV. Glad he is being treated for the infection....Thinking of you...thinking of Blake.. really wish I had more advice.. I just know many good SCI centers will not take someone who has serious bed sores until they are completely healed, and the person is able to do up to 3 hours a day of PT. Sounds like he has been at this hospital way too long without getting into a hospital which had the staff and training to handle someone who cannot turn himself and unable to speak for himself. Please push all you can.. Get him some way to call the nurses, even if it is a bull horn.

  9. #69
    The last time I saw him the other day his arms could not stretch out fully even with me putting force against them. As for the call light situation, he does have a pressure button thing that they put under his shoulder but he can't really press it hard enough to make it go off. Oh yeah, and he does have those boots that keep his feet pointing up with the kickstands and the heel guards. They keep those on a lot more than the arm things.

  10. #70
    Meagan, I see your step dad's care at the hospital now as the biggest concern. I am so worried about Blake's stage IV ulcers. This is the worst stage of wounds (and sounds to me as it was very preventable). It means the ulcer has gone down to the bone and blood, and this open sore is now exposed to the environment. An open wound like this is so dangerous, as can pick up other bacteria, infections, and people do die as a result. It is very important he has a wound care specialist overseeing his care who has a clue.

    There are long term acute care hospitals (LTAC's) in some states. These are private for profit businesses, who often will take the hard to treat wound care patient. Most regular acute care hospitals may have a wound care center, but cater to outpatients only. Others may have a specialty nurse on staff for inpatient. Either way, the largest fear I have is getting his wounds cared for and making sure the staff turn him every couple of hours, keep him dry, clean, and know how to care for him, ROM etc.

    He needs to have an accessible call button which he can use, not one for decoration.
    I would get him a bull horn, until they can figure out how to purchase a sip and puff or other type of call button which works for him.

    Is he on a vent? Eating? He is able to talk some it sounds like. Does he have a trach in?

    I am so sorry he cannot fully stretch his arms. This is called contractures and may be irreversable unless caught as soon as possible. There are braces or splints that can be used to help stretch his arms when he is not in PT or doing ROM (range of motion). This range of motion means to move his arms back and forth with alternate stretching/lenghtening and contracting. It is important to keep the blood flowing. If one becomes too contracted, and the joint becomes immobile, calcification and other bony changes can take place, causing great pain in the joint, and need for surgery. Sometimes surgery does not work or the condition does not lend itself to this. Serial casting can help:

    Has anyone met with Medicaid and working on getting his health insurance? Sadly enough ,many care centers treat us based on our ability to pay and health insurance we have. He will have to be injured 2 years before he gets on Medicare Can his other family get online too? This is a bad situation. Ask a lot of questions. Get his nutrition level up. Does he have a PEG tube? Supplements?. Want to send me a PM? Maybe I can help google resources for you?
    Last edited by med100; 03-04-2010 at 09:26 AM.

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