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Thread: super sad stepdaughter

  1. #51
    Hi. Glad he doesn't have pressure sores :-) Regarding getting insurance to pay for his treatment at Model SCI center- He may be in luck depending on whether or not he has traditional Medicaid. Memorial Hermann accepts " traditional Medicaid". I would check with your state Medicaid office to see if he has been accepted after he filed out all the paperwork... Check also with the model SCI center to confirm. :-)

  2. #52
    The social worker at the hospital should be able to help you with discharge planning, medicaid, etc.

  3. #53
    TAM, yes, good point. The social workers are usually good resources in hospitals, but I have found they may not always get you everything as they depend on the family to do the work, at least in my experience. I was advocating at a local hospital which did not work with the family to get Medicaid or Medicaid waiver, and was going to just discharge without this in place, and expecting it would only take a few days for the state office to approve everything. Often it can take 6-12 weeks to get it all approved. It needs to go through different hands, the state office often has to have a liason visit, get medical records, get doctors permission, check financial statements, etc. It is very good to do our homework and make sure all the Medicaid and Medicaid Waiver forms are set up, make sure home discharge plans start early, because once in rehab, the 6 weeks can go very quickly. Filing out SSDI, is another long process.. and Medicare. I am learning we really need to be our own best advocates...

  4. #54
    I agree, we need to be our own advocates in many areas. I have seen helpful social workers though, hopefully they will get one.

  5. #55
    Senior Member
    Join Date
    Nov 2009
    Galloway, Ohio
    I agree with med100 and tam63 - become your own advocate but allow the hospital social workers help get you started and on the right path. We are still learning today everything that is available to and for Sarah. We certainly could not have gotten this far without their guidance.

  6. #56
    Thanks Sarah's mom! (so nice to see you post here too :-) )

    To add, start early to get home set up. Sometimes need to add ramps to homes, widen doorways, change hardware, bathroom, shower, and other changes. Sometimes the state programs can help pay for this, so again, this is up to the family to learn what is out there, and apply, and make a bunch of phonecalls. There is a lot of great collective knowledge on these forums, including one for home improvements.
    Last edited by med100; 01-12-2010 at 09:31 AM.

  7. #57
    I just found out the other day that he has a stage 2, or maybe 3, sacral pressure sore. Does anyone know how quickly those develop? If it takes a long time then I guess the nurses lied when I asked them if he had any. He didn't even really know about the extent of it. But the good news is that he's off the ventilator and he has this red cap on the trach. I'm not sure if it's a speaking valve or a cap. He got to drink tea and juice and eat some chicken broth and a popsicle yesterday!

  8. #58
    Hi Meagan, glad he is off the vent. Great news. So sorry about the stage II or stage III wounds. Not good. Are they going to transfer him to a model spinal cord injury center?

    He needs to get to a place that specializes in SCI and do some rehab. Contractures and other issues, including decubitus ulcers should be preventable with medical staff accustomed to SCI. Did they give you pictures of the bed sores? I would make sure he has a copy of this. Important to make sure to ask the good questions. I read pressure sores are almost always preventable in an acute care setting.

    The wounds are due to lack of oxygen to that area, so an ulcer develops. Stage II and Stage III ulcers can take a long time to heal. Here is an article about it Simply put, stage I is when there is redness on the skin or otherwise a beginning of the pressure sore, and it gets deeper down to the bone. The fear with this or decubitus ulcers as it is often called, is it can cause serious and life threatening conditions (sepsis) or osteomylitis, etc. He should be turned every couple of hours. Is he on a proper mattress, such as a Clinitron bed or low air loss mattress, or something for his wounds? Others here may have more helpful information for you. Again, in my opinion, I would ask his doctors about moving him to a specialized rehab hospital for SCI as soon as possible and get PT now he is off the vent.

  9. #59
    Sorry for the long gap between posts... he now has stage 4 wounds with a result of osteomyelitis on his MRI this week. He has been approved to go to TIRR but they won't even put him on the waiting list in this condition so it looks like he'll be where he's at for 6 more weeks. They have a really good wound care team and connections to other resources that some places don't have, so I think he'll be ok. They said the reason he got this way in the first place is because of his lung problems, they couldn't turn him or he would get too low on oxygen or something. I don't know... other than that he's doing pretty good. They have him on an air mattress now and I see them turning him a lot more than they ever did before. They are doing some physical therapy with him but his left arm seems to spasm a lot and it ends up way up by his chest with his palm up.. it's weird, and then I can't straighten it out because it's so stiff. he says they work with him quite a bit though. I think they are starting to decrease some of his meds but they increased the one for spasms.

  10. #60
    Keep him out of TIRR until he's mostly healed. They don't have the staff to protect a wound like that imo. Great news that he's been accepted, that is huge. I think it might be a good idea to ask them for an advance copy of their SCI info notebook. He's got a lot to learn, may as well get started. Also, the more he knows now the better he can advocate for himself prior to going to TIRR.

    Without that special sci knowledge, HE IS AT THE MERCY OF THE HOSPITAL STAFF. It's dangerous. Many of them are clueless about sci, many don't care. I suppose most of us probably came out of ICU w/ a pressure sore to some degree or another. My roommate at TIRR was on a vent and could be turned but she did have a horrible sacral sore prior to going to TIRR, that required surgery in the first 6 months post-sci. Sorry, I guess I'm not buying the story that they couldn't have prevented it somehow (I tend to be cynical). For one thing there are beds that can help w/ circulation. I got the sore when they took me off that bed.

    Any chance of getting him on the computer? I feel like he's a sitting duck, in the hospital without the knowledge that keeps us alive...
    Last edited by betheny; 03-03-2010 at 04:32 AM.

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