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Thread: I need help

  1. #1

    I need help

    My husband had a closed brain injury and is a quadraplegic due to a dump truck accident that occured 10/18/2007. I am questioning so many of my decisions he is 56 years young and had just had a three way bypass in April of 2007. He is on hospice in a nursing home, he has terrible pressure sores from his right heel to up his calf on the right side and heel and ankle on the left side. He has not been up in a chair since 1/2008. We have a beautiful 6 year little girl that we are raising, we lost our house had to move three times last school year, etc etc I wonder if we had done things differently if we would have had a better outcome and at what point is a person to far gone. My husband is taking 300 mlg of phentonal given in patches every third day which the drs say is a very large dose and could be deadly, he takes roxinal every two hours when he needs it and many other medications. My husband had larnyx cancer in 2002 so he has an open stoma 7 days after that surgury they found thyroid cancer so another huge blow and huge surgury. With the cancers and the bypass and then this horrible accident I think to myself how much is enough for someone to go threw. I am rambling and I apologize I would just like someone to talk to that has been there or is there now.

  2. #2
    kandycane, I moved this to its own thread as it is more likely to get responses that way.

    Welcome to our forums. It certainly should like you are dealing with many challenges. You may want to join in our Caregivers forum as well as this one, although it sounds like your husband does not have a SCI.

    Why is he on hospice care? Generally this is reserved for someone expected to live less than 6 months. This would be most unusual with a brain injury (as long as his cancers have not returned as well).

    What is his Rancho Scale category currently? How well does he communicate? Is it verbal or otherwise? How oriented is he to time, place, person, etc.? Did he go to a brain injury rehab program?

    The pressure ulcers he was allowed to develop are very concerning. These are preventable. You may need to see a lawyer about the negligence that led to their development. I hope he is getting care coordinated by a good CWOCN at this time and that all pressure is being kept off his heels. What type of bed is he on? What treatment is being used?

    As far as his meds, why is he getting Roxanol (this is a brand name for morphine)? I assume it is being used as it is a liquid and he cannot swallow so it can be given via tube feeding? Have you asked about the use of a patch such as Fentanyl? What is the pain being treated, and how do they know he needs a dose? Perhaps this is what you mean by phentonal?? I can't find a drug with that name, although it is close phenytoin (Dilantin), which is not give by patch and is for seizures. Which patch size is he getting of Fentanyl? It comes in sizes from 12 to 100, and the dosage should be described in mcg./hour. It is a very potent narcotic, and can cause respiratory depression if the dose is too high or increased too suddenly, but otherwise I am not sure why the doctor would say it could kill him.

    Have you had any contact with local chapters or the national Brain Injury Association: http://www.biausa.org ? They can be quite helpful in providing both information and support for family members of those with brain injuries.

    (KLD)

  3. #3
    This is just a heartbreaking story. I am so sorry for all you and your husband have gone through. The last 6 years have been so so hard. No one person should ever have to deal with so many medical difficulties. However, the fact that you have made the decisions to treat them one by one means that you and your husband must be tough fighters. Also, it looks like he made his way through them one by one. Also amazing. These are all good things in your favor. With the information you have given us, it is not clear that you should be giving up the fight yet! He is 56 years young!

    First, I think you have so many things to juggle, that sometimes it helps to step back a little. The nurse is giving very good advice, and is asking great questions. Reply to them if you can. And look for people around you to help with emotional support and decision making - family, friends, social worker and case manager at the hospital, and hopefully.... some health care professionals.

    Is your husband able to make decisions with you, or are you the sole decision maker? It is not clear to me if his brain injury is a prominent issue at the moment, or is his spinal cord injury and the related complications (the pressure sores) the main medical issue? The nurse is correct that hospice is a choice of treatment made when you are focusing on making your husband comfortable but no longer pursuing aggressive medical treatment. It is not clear to us from the information given so far why that choice was made, and if it needs to be the only option at this time.

    I am praying that there are a few doctors that you have been able to turn to that are helping to give you advice. Hopefully at least a primary care/general internal medicine doctor and a physiatrist that can give you recommendations. And considering the very large amount of pain medicine he is getting, a pain specialist should be monitoring him closely. All of these doctors should be talking together. If you are not satisfied with what your current doctors are telling you, don't hesitate to ask for second opinions and/or getting completely new doctors involved to evaluate the situation. I know it seems hard, but this is so important - you should not be shy about asking for more input.

    What kind of brain injury and spinal cord injury did he have? It is still very early after his spinal cord injury (and after his brain injury) and improvements could still be expected in both of these conditions. The rate of improvement has been dramatically slowed because of the complications and because he is bed bound. But this doesn't mean that he cannot improve once the other problems improve.

    Regardless, the pressure sores are very concerning and must be addressed. The nurse is exactly right that these sores are preventable and if they occured while he was in the hospital/nursing home they are THEIR FAULT and you should get a lawyer involved and start screaming about this. You could sue them for this, I think (?nurse - maybe even email Joseph Romano - a lawyer in Pennsylvania who has experience with catastrophically injured patients - he writes a free book about relevant legal issues that you can request by email at info@josephromanolaw.com). If a patient develops a pressure sore in the hospital, many insurance companies will penalize the hospital by refusing to pay for the care for the sore - forcing the hospital to absorb the cost. This is because the hospital knows how to prevent the sores (turning the patient regularly, special boots on the feet to protect the heels/ankles, low pressure mattresses on bed etc...), and it is their responsibility for doing these things. Clearly, they didn't do them. I would hate to think (cynically...) that they hospital is discouraging you from treating his sores because they would have to pay for it, but these days I unfortunately must admit such ugly things could occur.

    He needs the appropirate wound care nurse and possibly a plastic surgeon to look at the sores and assess what the proper treatments are. And he must be receiving appropriate care now (see the nurse's questions) to help them heal (high nutrition/high protein, debridement, anti-bacterial creams etc...). However, if he is in hospice, they will not be treating these appropriately, as by definition in hospice they withdraw all treatments and only provide comfort care.

    I am assuming that his cancers are now stable, and now his heart is better then ever because of his bypass. I would think these were all good decisions to treat so certainly don't have regrets about those! Actually, the bypass probably saved his life and he likely would not have survived the dumptruck nightmare if his heart had not been fixed. Does he still have heart doctor and a cancer specialist who still know him. Check in with each of them to ask them about the status of those problems. You need to make sure that current doctors are not presuming that these prior problems are reasons for not treating him as aggressively as they should.

    Unfortunately, most doctors do not understand brain injury/spinal cord injury well and also presume the worst when they hear those terms. They consequently may be less aggressive in their recommendations because they think it "isn't worth it". But they don't understand that thousands of people every year sustain these injuries, improve over time and live healthy fulfilling lives.

    For example, when my dad got hit by a taxi 11/07 his legs were a mess from multiple fractures/tissue injuries and infections, the plastic surgeons were not aggressively treating them because they heard he had a spinal cord injury too so they recommended that we just amputate his leg so he could "get to rehab more quickly". They just assumed since he had a spinal cord injury that he didn't really need legs! Unfortunately, we couldn't find an appropriate doctor who knew anything about spinal cord injury to give advice to the other doctors. And unfortunately, these can be hard to find...... Well, ultimately we refused to accept their recommendations and wound up taking him to another hospital and sure enough, they fixed his legs. And now, after several grueling months of healing and rehab, my father is walking short distances with a walker. You never know.... But it has been a hard road, and my father certainly had many times during the past year when he thought it wasn't worth it. I think now he believes it was worth it.

    I realize that it is so important for both you and your husband for his suffering to be stopped. What a nightmare this has been for you all. And it is so hard to be rasing a beautiful young child throughout all of this.... But we just want to be sure that you are getting the appropriate information you need from the doctors to be making such important decision for his care and his future.

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