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Thread: What to do: Mother with new SCI

  1. #1

    What to do: Mother with new SCI

    My mother is 65 years old and has a recent C6 injury. She was airlifted to the UC Davis Med Center and had surgery the day after her admission, after which she was placed in the Neurosurgery ICU. Early on she did pretty well, altho her throat swelled after she was re-intebated the second day in the ICU, that left her stuck on the ventilator...eventually she chose to get trached. About 3 weeks in, she was doing great...over 48 hours off of the ventilator when she developed complications with her breathing, but this happened at the same time it was noted that the hosing to her trach was dry (staff couldn't say how long they had been dry...perhaps part or all of the night). There were several days there where she almost died. I think that altho her system is altered a bit because of her injury, a lot of the problem was that she was still getting over pneumonia and the mucous in her lungs dried out and clumped together. But she went thru a lot of trauma as a result, got her worried about her ability to survive and prosper, worried about her ability to breathe, and also the hospital is taking a much more conservative approach to weaning her off of the ventilator. After 1 1/2 months, she was declared "stable" and moved to a transitional unit that could theoretically accommodate her ventilator while providing her with some rehab, but she's gotten very little OT/PT during her stay. A doctor in this new unit was very proactive in recommending she be switched to Santa Clara Valley Med Center for rehab. But, after an interview, Mom was turned down as a candidate because she has an active sore on one of her buttocks. Apparently SCVMC is really proactive and a lot of their rehab work centers around the use of a wheelchair, and it is part of their protocol to turn down people with active sores in such a pivotal location. SCVMC suggested that Mom consider a rehab facility in Marin...called Kingston or something like that (sorry am at a coffee house using their WiFi and am away from my paperwork). A representative from that facility will be interviewing Mom tomorrow (Wednesday). UCDMC also suggested looking into Kindred Sacramento. Really, I want a place that will work at weaning Mom off of the vent and provide some regular OT/PT, because right now she is just lying there a lot of the time. I don't think this particular unit is UCDMC has enough access to OT/PT personnel...or maybe UCDMC is low on OT/PT personnel in general. Anyway, I would love to hear any of your suggestions. BTW, my mom is on Medicare and AARP Medicare supplemental insurance. We do have someone looking into what things will be covered as Mom's stay in the hospital or rehab facilities becomes more extended. I understand that things get difficult around the 3 month mark, or at perhaps a monetary cap. Another delightful concern to have on our family plate.

  2. #2
    The hospital that allowed your mother to get a pressure ulcer (which is preventable) needs to do something to get it healed. Under new Medicare regulations, they cannot bill Medicare for an extended stay that is due to a pressure ulcer that they gave to her. You need to bring this up to them. Trying to turf her to another facility is NOT an ethical way for them to deal with this. How severe is the pressure ulcer (stage)? What type of bed is she on? Are they keeping her turned completely off the sore? Keeping the head of the bed at 30 degrees and no higher for the VAP precautions? Is she being managed by their wound care expert nurse? Has she been seen by a plastic surgeon?

    What are they doing to try to wean her now where she is? See the "sticky topic" at the top of this forum on SCI respiratory care and vent weaning, and take it to her team and discuss it. Medications such as 4-AP and theophylin may be helpful at this juncture since her respiratory muscles have been allowed to atrophy with such a long time on the vent.

    SCVMC is by far the best place for her to go, and she should have been moved there immediately after her injury. Kindred and other facilities such as this are NOT equipped to provide her anything more than maintenance care at best, and certainly not expert SCI care. I would be VERY reluctant to have her to anyplace other than a facility that is CARF accredited for acute rehab, and specifically as a Spinal Cord System of Care.

    You will have to be a very forceful advocate for her, as most health care professionals are clueless about SCI. You will need to learn a lot, fast. We are here to help.

    (By the way, I assume your mother is not a military veteran???)


  3. #3
    I would suggest getting your mom into the trauma unit at SCVMC as they take SCI with pressure sores. A member here had her husband there with sores.

    The hopsitals recommended are all LTC facilities, more nursing homes that do some rehab. Avoid them at ALL costs. Are you from the Sacramento area? My first physiatrist is Margaret Portwood in Sacramento and she is excellent. May be worth an outside opinion. She left UCDMC for private practice.
    Every day I wake up is a good one

  4. #4
    I am the mother of an injured teen. I can't help you with specifics about where to look in your area, but I wholeheartedly agree with the SCI nurse that you need to be a strong advocate.

    It's not your job to be nice, accomodating, pleasant, cheerful, or anything else. You need to be one tough cookie. Don't be afraid to ask questions and demand answers. If you don't like the answers you get, ask someone else. Heck, I've sent certified letters to the president of the hospital demanding action. Be the squeeky wheel. And don't be afraid of what the staffers think of you.

    As they said on Saturday Nigh Live: "Bitches get stuff done."

    Stay strong.

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

  5. #5
    The writers above are right on. KLD is the best there is for good advice on SCI care, always.
    Your mother didn't happen to get a pressure sore while she was in the hospital, they gave it to her - it is their doing, their responsibility. Don't forget that when you talk to them, and make sure they know it. PeanutsLucy has the right attitude. It's very easy to accept what you are told by medical staffers who pass themselves off as "experts" but in fact know little about SCI. They will say they have had SCI patients before, but that says nothing about the quality of care those patients got. Don't let them intimidate you. You'll find the real experts here, and wherever KLD says.
    Ask any questions at all here and although the answers may not always what you'd like to hear, I've found that you can be assured of getting the best advice.
    - Richard

  6. #6
    From day 90-150 of a Medicare hospital stay she is in what are called the "Lifetime Reserve" days. They are called Lifetime Reserve because
    Medicare will only pay for days 90-150 of a hospital stay once in a person's lifetime. Because your mom has a Medigap Supplemental policy through AARP, she should have coverage for an extra 365 Lifetime Reserve days paid for by the Supplement. She will stop using Lifetime Reserve days when she gets out of a Medicare funded facility, either SNF, LTAC or REhab, and stays out (home) for 60 consecutive days. Then her regular Medicare days start again.

    While KLD is correct that a diagnosis of pressure sore will result in no payment to the hospital after the date the sore was documented, it does not mean that they cannot transfer her to a "lower level" of care if she does not meet acute hospital stay criteria.

    The hospital is losing money on your Mom and the Case Managers assigned to her are under pressure to get her out.

    Is it "ethical"? As Bill Clinton said "It depends on what your definition of Is is.

    What can you do?

    First, get hold of the patient advocate at the hospital and document a complaint. This will buy you a day or two. Get a photo of the sore and have someone tell you the stage. If it is a small stage 1 or 2 in a location that is not affected by seating, ask for a re-evaluation from the Rehab Hospital and ask to talk with their admissions nurse. If your ONLY choice is LTAC or SNF, take the LTAC. LTAC requires a daily MD visit and there will need to be a Pulmonary (Lung) doctor to do ventilator weaning. SNF patients may only get seen by a doctor 3x a week and staffing is minimal because Medicare payment is minimal. LTAC can-emphasis on can-provide up to 3 hours of PT/OT a day. Many Rehab doctors consult at LTACs.
    Last edited by cmoore; 01-03-2009 at 06:21 PM.

  7. #7
    Quote Originally Posted by cmoore View Post
    First, get hold of the patient advocate at the hospital and document a complaint. This will buy you a day or two. Get a photo of the sore and have someone tell you the stage. If it is a small stage 1 or 2 in a location that is not affected by seating, ask for a re-evaluation from the Rehab Hospital and ask to talk with their admissions nurse. If your ONLY choice is LTAC or SNF, take the LTAC. LTAC requires a daily MD visit and there will need to be a Pulmonary (Lung) doctor to do ventilator weaning. SNF patients may only get seen by a doctor 3x a week and staffing is minimal because Medicare payment is minimal. LTAC can-emphasis on can-provide up to 3 hours of PT/OT a day. Many Rehab doctors consult at LTACs.
    Please know that once you accept a LTAC or a SNF, it is next to IMPOSSIBLE to transfer out. Choose carefully. As I said, see if she qualifies for the Trauma rehab at SCVMC. I know for a fact that they accept folks with pressure sores.
    Every day I wake up is a good one

  8. #8
    I hope that cheesecake is correct and that your Mom gets the care she needs and deserves.

  9. #9
    Junior Member
    Join Date
    Mar 2008
    Ireland (brother in law is in Germany)
    I really hope your mom can move to the specialist Rehab centre, it will make such a difference to her.

    My brother in law (C4-C5 since Jan 08)was moved from a specialist unit to a general hospital where they didn't even have a hoist to move him. He was then moved to a nursing home where he basically lies on his back all day and only leaves the bed when the physio is there twice a week. This is so frustrating and I just don't know how he can get access to better rehab. He lives in Germany.

  10. #10

    In LTAC rehab now, but sounds like a good one

    Hi all. Thank you for your notes. I didn't realize that there were messages for me, because I didn't get any notes (from the site) about it in my email, and I was pretty busy with my mom.

    Okay, so at this point, some decisions have already been made and I can't follow through with your great advice.

    I did not photograph the pressure ulcer. [Wish I had thought of that.] However, I did make a big stink with the UCDMC charge nurse, the treatment team, and her doctor on clarifying treatment procedures for my mom's pressure ulcer so that the entire staff would be working from the same perspective and would not set my mom's healing progress back even minisculely.

    This was an issue not just because my mom had this ulcer and it was what got her disqualified from SCVMC's rehab, but also because I noticed other missteps in Mom's healthcare that could be considered neglect...including poor oral hygiene, where I couldn't even see the gumline, and placing her call button on her weaker side (and below her hand reach) without telling her.

    I was only in town for about 9 days...during the this left me limited options. I did things for my mom, observed staff and my mom's condition, called staff out on problems, including demanding more OT/PT visits, and looked into rehab options for my mom.

    --> When I left, with my mom's approval, I designated 3 of her friends who regularly visit as people to watch over her care and look for signs of neglect and make sure she is being taken care of of whom has some nursing experience. With their observations, I would be able to be more proactive at a distance if needed. But I told my mom that she is the only one who is there 24/7 and that she would need to be more assertive in seeing to her own care and speaking up about problems. I left her a clip board with a pen rubberbanded to the clip, so that she could have doctors write down medical issues she should remember, or staff or friends write down care concerns that she wanted the family to know about. In the short time between the end of my visit and her transferring from UCDMC, she actually used it for this that was excellent.

    Staff were responsive to my comments when I was there in person, were responsive to my phone complaints post-visit, and from what I hear they also followed through on my mom's own direct I can't say the unit was all-bad. Still, the unit my mom was in at UCDMC was just not a good place for her in general, and we decided to find her the best rehab option we could. In the end we liked Kentfield Rehab & Specialty Hospital (a longterm acute care hospital & rehab), and my mom decided she wanted to go there.

    She was transferred there on Thursday (Jan 8th). This is the place that SCVMC recommended as an alternative to their facility, saying the facility gives patients a lot of the same work that SCVMC would do (prepping them nicely for SCVMC should they ever transfer to that facility). My mom's friend toured the facility before endorsing it, and said that she has never seen a busier place and thought my mom would do well there. [The Kentfield rep told my mom bedside at UCDMC, that she was going to be so busy and tired from rehab work that she wasn't going to even notice if she had fewer visitors.] I also spoke with a gal with a C2 SCI who is a peer counselor through UCDMC; she said that altho she didn't know Kentfield personally, she knew people who had gone there and they had done well as a result. So the switch sounded like a good deal all around.

    Prior to my departure, I did take a tour of the Kindred facility. It felt very sleepy and reminded me of a hospital version of the nursing home where my gramma stays. [To be fair, my tour was on Dec 31st and so they may have been less active...I don't know.] The facility was an option for my mom to consider...and she was pretty passive over the holidays, so I thought she might go that route...but in the end she sort of flipped a switch and decided to become more proactive and get to work, choosing the Kentfield option. And I am glad about the change in her state-of-mind, as well as her choice of rehab/LTAC (so far--I mean, no place is perfect, right?)

    Personally, I think that the particular unit my mom was in at UCDMC after being switched out of ICU, really just didn't know what to do with her, and I'm glad that she is elsewhere now. [The situation may have been different if she had not been vent-dependent, so that she could have been moved from ICU directly into the UCDMC rehab unit.]

    So now that she is in rehab, we have to look at her Medicare / AARP medigap benefits again.

    What confuses me is the gap between the 415 days she might be able to stay in hospital according to her insurance coverages (should she use ALL of her lifetime days)...theoretically the total insurance benefit that she could qualify for...and the restrictions suggested by what I've read online that Medicare assigns limits to hospital stay depending on diagnosis...and that it is to the hospital's benefit to discharge patients early, even if it is not to the patient's benefit.

    I'm in Southern California, so other friends and family are assisting some. But my brother and I are in charge of managing my mom's estate and medical care...altho we are long-distance. It is a challenge. What I'm hearing thru my mom's friend...who accompanied her to a concern about my mom getting out of rehab soon, something to do with her insurance coverage, and getting all worried about getting the house and 24-hour caregiving set up. My brother and I just faxed in the Power of Attorney and her Advance Health Directive to add to my mom's new hospital. Due to HIPAA violation concerns, hospital staff may not be inclined to talk to us on the phone without these documents in their possession.

    We are trying to research the insurance issues at present so that we can call in to Kentfield staff...maybe on Monday...with some informed questions about how they plan on utlizing her insurance coverage, projections for length of stay, etc.

    But I would welcome any suggestions or info you might suggest.

    Thank you!

    PS: I have received messages suggesting facilities outside of Northern California...some near where either my brother or I live. Thank you for suggesting them. However, it is best for Mom's state-of-mind to keep her close to extended family and friends and her home. Moving her elsewhere would make her anxious and remove a lot of outside I consider them only back-up options. It isn't ideal that my brother and I live so far away, but there you are. I will be moving back to Northern California this summer after graduate school, so the distance will be less of an issue then.
    Last edited by TheDaughter; 01-10-2009 at 02:09 PM.

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