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Thread: Son with new sci injury

  1. #1

    Cool Son with new sci injury

    Hello Everyone,
    My name is Diane and I am the mother of David, a new T-5 complete sci patient. We are in the learning stages of this journey and could use some encouragement and advice. David had severe injuries in addition to the sci which included a torn aorta, requiring a graft to be done and the fraft threw a clot down to his lower intestine killing off a large portion of it. That required doing a resection but thankfully there was enough to reconnect. He had surgery on the spine to do a fusion from the T-4 to the T-8. He had surgery for a torn rotator cuff as well. He was in shock trauma in Baltimore for 4 months and in rehab for 2 months. While in shock trauma he got pneumonia and some of the usual aquired bugs up there and also had pneumonia. All in all, my boy has overcome many things and thankfully he is a fighter. He also came home with 2 big pressure sores from shock trauma and one on the sacrum from the rehab. He has a wound vac on the 2 original sores and they are healing up nicely. However, the home care nurse recommended a donut for under the sacrum and it caused a huge bruise which has now opened into a sore. There is a lot of necrotic tissue that needs to come off so we can use the wound vac on it. The main problem is David has not been very mobile due to the pressure sores he had and it is hard for him to lay side to side because of the pain in the shoulder from the rotator cuff surgery. It seems like there is always a step back and I don't know what else to do for him to prevent these sores. They allowed him only 2 hours out of bed in rehab per day and that was for therapy. We are told he needs to get out of bed and to stay off his bottom and that is not easy to do. He has not been able to transfer himself yet due to the sores and no one tells me how to help him. He has in home pt and ot twice a week right now but he really wants to get moving and get back to life. He is so young and it kills me to see him like this. Any suggestions?
    Thanks so much, DavesMom Diane

  2. #2
    Senior Member Riaan's Avatar
    Join Date
    Jul 2007
    Alberton South Africa
    Hi Dian im a quad and also had a bed sore on my sacrum,yes it hurts to lie on your shoulders but its very importand not to put presure on the sore.Mine took about 4 months to heal.The best is for him to try and sleep on his tummy,sci nurse will help with meds. I used Colloidal Silver that you spray on the wound and it worked for me.Good luck

  3. #3
    Hi DavesMom: Do you live in Maryland? I can get you resources and information that will allow you to navigate this new life a bit easier.
    Send me a PM and I can get you set up with everything you may need.

    Where did your son do rehab at?
    Every day I wake up is a good one

  4. #4
    It is criminal that he was allowed to get these pressure ulcers and that a nurse would advise the use of a donut when we know they cause pressure ulcers. I hope you have seen a good attorney!!! Hospitals will only change their care related to iatrogenic pressure ulcers when it starts to hurt them in their (deep) pockets.

    Your son needs to see a good plastic surgeon and be evaluated for a flap. A wound VAC is unlikely to close the wound, and you and he will waste a lot of time trying to do so at this point. It would be better to bite the bullet and have a flap, with the attendant 6-8 weeks of total down time, and then be able to get on with his rehab (ideally an inpatient stay for his sitting program at the end of that time and then more intensive rehab at a reputable SCI specialty rehab center that knows what they are doing).

    What kind of bed is he on? He may need a Clinitron at this point. At the bare minimum he should be on a high-tech LAL (low air loss) mattress, and still try to lay only side to side as even these can cause sacral pressure ulcers to worse.

    Has he been tested for osteomyelitis? This would have to be treated with IV antibiotics first (6-8 weeks) PRIOR to any flap procedure if it is there. It is an easy area to get it as the bones are so close to the surface.

    Is he getting plenty of protein intake? A good high potency multivitamin? Are his pre-albumin and albumin levels being monitored? I hope he is not using any tobacco products as this can really set back healing.


  5. #5
    Wow, poor kid has been thru the wringer. How old is he? Are his friends sticking with him? Seems to me kids can endure anything until the friends go. Take away their social structure and their will seems to go with them.

    So I pray he has good friends.

    He clearly has a good mom. That's a huge blessing, and an ace in the hole on par with youth, the other great advantage.

    I hope you'll do everything kld says, up to and including calling an attorney tomorrow, if you haven't already. For the sake of discussion, I'm going to assume you are stinking rich and haven't called an attorney. It's not like you have time for a lawsuit, and you don't need the money. You still have a moral obligation to sue them till they bleed, b/c this pressure sore nightmare happens way too often. They are hard to prevent, but not impossible, and it is that hospital's/home health nurse's JOB to do it. They probably think a pressure sore is, well, a sore. They aren't. The skin never recovers to pre-sore state. It puts us at risk FOREVER. It drain our bodies, our spirits, our bank accounts, our immune systems, and time we need for rehab. What they did to your son is criminal.

    I know, I'm preaching to the choir...but enough is enough.

    A dear friend, an able bodied gentleman, wrote a few days ago. Somehow he met a family w/ a new SCI among their ranks. They don't speak English; is there any way I can help?

    I told him, somehow PLEASE, convey to them that the kid has to be rolled every 2 hours. I hope they get the message.

    Let us know how we can help. We like to help. I'm so sorry this happened to your son.

  6. #6
    Junior Member
    Join Date
    Dec 2008
    Glenwood Springs CO.
    Hello Daves Mon, I am Keith's Mom, I know how you are feeling and how difficult this is. My son is T-3 complete, he too was busted up pretty good. (April 2 2008 )he got a sore from our local hospital, his bed sore lasted 22 weeks. Really good suplimental nutrition, protein (not the crap Ensure ) they get is very important as the SCI nurse also said. I recomend RELIV you can't get it in stores go to "The Classsic"
    He has to be turned completley side to side every 2 hours. The nurses at Craig re-hab in Englewood CO were excellent at moving Keith. They may be a resource. Talk to us ant time.

  7. #7
    Daves Mom, please listen to KLD. She is one of the most experience with SCI. My son got the pressure sore during the 6 hours surgery. When he was in the SICU, the nurse was supposed to turn him every 4 hours but they didn't always do. We didn't know that he had pressure sore until they transfered him to SCI center. It was discovered by SCI nurse. He was very lucky, the worst condition was stage 2.
    Please take good care of your son and advocate for him. Best of lucks to you and your son.

  8. #8
    Senior Member wtf's Avatar
    Join Date
    Jan 2004
    silver state
    Daves Mom and K004H, you two ladies remind me of my moms without her I don't think I would have done so well without her support and encouragment. I'm glad your sons have each of you ladies while they adjust to sci life. I fortunately haven't dealt with a pressure sore but as you read more on the messageboard you'll learn so much I know I have. Much success in healing the pressure sores, take care

  9. #9
    Hi Everyone,
    It is so nice hearing from you all. It makes this journey much easier to deal with. It is so hard seeing my son hardly able to do anything.
    Betheny, David is 31 years old but still my baby boy. I guess no matter how old they are, they will always be my babies. David has 3 siblings and this has been hard on them too. Your kind post is much appreciated.

    KLD, David has not had much of an appetite at all. He is taking iron and a good multi-vitamin. I had forgotten to mention that he has a paralyzed vocal cord from being intubated so that has given him problems swallowing large pills. The 2 pressure sores were actually worse than a stage four but thankfully have closed up with nice new tissue pretty well. I am worried about the one on the sacrum and the bruise that opened up into a sore. It feels like we are starting over. I just want him getting back to life and doing things to make him happy. He has been through so much.
    The pressure sores from shock trauma I always figured they had so much to deal with in keeping him alive. He was on a ventilator a long time and had broken ribs and a collapsed lung. I just assumed they had to take care of the most important things.
    My real issue is with the rehab. The employees there didn't want to move a muscle to do anything. I can't tell you how many times I had to argue with them to get anything done for him. He was never turned every 2 hours and if they could help it, never even went in his room. Trying to contact the doctor even now is like pulling teeth. I just never thought about getting an attorney but the rehabs neglect certainly did not make things better.

    WTF, you are such a beautiful young lady. As moms, we all want the best for you and want to lessen any hurt for you if it is at all possible. I know when I look at my son all I can think is if I will ever be able to look at him and not feel like my heart is breaking all over again. And yet, I am thankful every minute of the day he is still here because with his injuries as serious as they were, it is a miracle that he is.

    Your posts really mean so much and any advice is appreciated.
    DavesMom, Diane

  10. #10
    Daves Mom,

    Good grief, you guys have been hit hard! Hang in there.

    My son was 14 when he was injured two years ago. It's a long rough road, but I'm sure Dave will do well with you by his side.

    Don't be afraid to be a total witch and really raise some cane in order to get stuff done with the hospitals, doctors, rehab folks etc. I think KLD is right and that a call to an attorney is warranted.

    Feel free to send me a message if you just need to vent with a fellow mom.

    Take care!
    Ugh, I've been kissed by a dog!
    Get some hot water, get some iodine ...
    -- Lucy VanPelt

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