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Thread: C5 complete son is coming home and I don't know where to start

  1. #11
    I'm so sorry that you are going through all of this. The weeks after discharge are some of the hardest and require a lot of adjustment. Besides CC (a GREAT resource), you may also want to get in touch with the Christopher and Dana Reeve Foundation. They've recently begun a peer mentor program, which would connect your son with other SCI-ers in the area. They'll know a lot about resources/funding/etc, and will be able to help as you make this transition.

  2. #12
    Senior Member
    Join Date
    Jan 2003
    Madison,Wisconsin, USA
    YES!! Strongly advise a motivated peer of the same level. Also, make him do all he can for himself, very important to start that way. many c5's live alone.Start him on that mindset now. and be careful buying equipment at first, many times they won't need it in a few months. try to get all from PT and OT now, transferring independently is huge. get the nurses to order huge amounts of urinary supplies to last the first couple of months, it is one less thing to worry about in those crazy first months. make sure he has a good fitting wheelchair and scare the shit out of him with pictures of bad bedsores so he thinks of them seriously. ought be a good idea for you to hook up with a mentor too, so you will know how much to do and how much he should be able to do.

  3. #13
    Hi, I found a group -- unfortunately it's monthly meeting was the day before yesterday. Bah! I got on the email list and will go next month.

    He has missed so much of his therapy due to extremely low blood pressure and sedation (he fights removal or reduction of any medication tooth and nail) that he is not ready to safely be cared for at home with only a nurse doing a vitals check once every other day or so (case manager says no more than it takes to do vitals and change any bandages) and me the rest of the time.

    I really don't know how anyone sleeps in 3 hour spurts. I have been unable to concentrate. The cathing is only once every 4 hours but it's disruptive. I feel like I've aged five years in the last month.

    I seriously injured myself this week going through his routine (I have no health insurance -- yet, due to pre-existing conditions law in Fl that will soon become a thing of the past!) and with about 10 days left on his stay in rehabilitation, I know now we have to find some interim where either he can get stronger and learn to do transfers and other things for himself and/or a place of the Florida Medicaid Waiver program magically opens up and we can get some help.

    I'm looking at skilled nursing facilities that have any spinal cord experience nearby so I can still help and make sure he is getting cared for.

    Not much to be happy about.

  4. #14
    Ashleigh, I know the doctor needs to prescribe the care and Medicare will pay for nursing, but nursing is blood pressure, cathing, and vitals. He does his own bp and whereas the cathing would help, it wouldn't let me go to work, the supermarket, or sleep more than 3 hours. Medicaid will pay for home health care -- bathing, dressing, which would take a big load off, but there is a very, very, long wait list for those services if Florida.

  5. #15
    Senior Member muskie's Avatar
    Join Date
    Sep 2011
    Port Jervis, NY
    Does he have any hand function to cath himself? if not he could have an in dwelling cath which will relieve you of some stress. I don't know how strong or how big your son is, but if he is just getting out of inpatient rehab, transferring is going to be tough. My son is a C5 as well, before the injury he was very strong after he could barely lift a glass of water. It took time and a lot of therapy but he is stronger now and can transfer with minimal assistance.
    Please join me and donate a dollar a day at and copy and paste this message to the bottom of your signature

  6. #16
    Hi Muskie,

    He has virtually no finger function but has wrists. We got some samples of gripper caths that supposedly are useable by people with little hand function. But right now he's condom cathed too -- leaking most likely caused by a med to control his blood pressure.

    He was a computer geek before, no upper or lower body strength. He actually has a little bicep bump for the first time ever. He's not overweight, but prone to binge eating -- maybe a family trait or a result of an antidepressant. Not even close to a self transfer.

  7. #17
    Oh, 6'2" 185ish

  8. #18
    Also, be sure to check out independent living centers in Florida for one near you. If possible, meet face to face with any sources to thoroughly discuss their programs and suggestions.

    Many senior assisted living places (not "nursing homes") also allow younger disabled residents. These are apartments with an array of services (like cleaning, meals) , but he would need to set up attendant care through Medicaid. I think the apartments here in Mi run about $500 to $1200 a month depending on income.

  9. #19
    Thank you triumph. Cleaning and meals would be a big help in getting him home I did not look into assisted living very well because those I did google were very expensive -- but I will look further. But that attendant through Medicaid is still a big stumbling block. I picked the wrong time to be underprivileged.

  10. #20
    Wow. I just had to update this -- I was looking for the person who said to contact Centers for Independent Living to say THANK YOU! Although I had called them a while back apparently I had not talked to the right person or asked the right questions and had written that organization off.

    When my son left rehab his case manager convinced us the best possible thing was a nursing home as he would only get an hour every other day of nursing visits, doing the rest until he was more able would kill me (most likely), etc., etc.

    We went to a dozen places and chose one where he P/T had some SCI experience and the place had a good rating and a good "feel", and was close enough so I could go everyday.

    Whereas the P/T as some SCI experience the nursing staff does not. I do his bowel routine. The RN said she was interested in learning and they should know how to do it -- and came in to see. When I began she got flustered and left. Oy.

    Furthermore they put him in this giant wheelchair that he could barely propel and suggested he bring his own. His insurance won't permit an order until he has a discharge date. His chair from rehab was cancelled when he was admitted to the SNF.

    That's when I remembered about the Centers for Independent Living and that they had used equipment for people. I called them. I told them about my son, his wait on the Medicaid Waiver list for home services.

    In less than 24 hours he had a terrific chair and he is in their nursing home transition program!


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