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Thread: 25 days later

  1. #21

    on the way maybe

    right now we are waiting for a bed at rancho... but he is currently still at harbor ucla hospital. but they are saying he cannot stay in the hopital too much longer and say that they have to transfer him to a convalescent home while he waits, because there is no way to tell how long that wait will be. so currently we are trying to find out what we can do while we wait for his bed. i work as an emt, so im constantly visiting nursing homes, ive only seen 2 or three out of probably hundreds that i even consider close to adequate.

  2. #22
    If he cannot get into Rancho right now, other options might include the following, although not all will take ventilators:

    Long Beach Memorial Hospital Rehab Center
    Casa Colina Rehabilitation Center (Pomona)
    Northridge Hospital Rehab Center
    UC Irvine Rehab Center

    Also, you may want to see if you could convince your insurance to send him to Craig Hospital in Denver. It is one of the world's leading centers for SCI rehab. Santa Clara Valley Medical Center in San Jose would also be an option.

    Any of these would be better than a nursing home, even if it means him being far from home. Those nursing homes that take ventilators (very few) are generally storehouses for people in persistant vegatative states (long term coma), know little or nothing about SCI, and have minimal staff with nurses aides (few RNs). Pressure ulcers, contractures and pulmonary infections (often with MRSA or VRE) are rampant, and severe depression is often the result.

    Have you spoken to Rancho people yourself? Don't just depend on the discharge coordinator or SW at Harbor General.

    (KLD)

  3. #23
    He is FINALLY in rancho!!! he is in the icu right now over there. so far he has been there 4 days, they really havent done anything there yet. but im glad he is finally there. anything i should ask of them or anything?

  4. #24
    Great!

    1. Ask them how soon you can have a family/team conference. This is a critical meeting for asking questions, meeting all key team members, setting goals, and talking timelines.

    2. Ask to meeting Marilyn Pires, RN, MSN, the clinical nurse specialist for SCI there, and ask that she be your friend, confidant and advocate. She is an internationally known expert on SCI care.

    3. Get a home evaluation done ASAP so you have time to get home modifications done before discharge.

    (KLD)

  5. #25
    I had a question... my brother says he feels stomach pains sometimes. ive witnessed it twice. once was last week when they just had finished tube feeding him with that syringe looking thing that they use for the Gtube (he was asleep when that happened, so he didnt know he had just been fed), he woke up and was like "my stomach hurts". the second time was today, he said he felt like he had to have a bowel movement and it hurt a lil like he really had to use it bad, (he said he tried to push but didnt have the bowel control), but a minute later he had bad diarrieah, and that was the first time he had a loose bowel movement like that in weeks!

    my mom told me that he was feeling pain in his stomach a few weeks ago when he had a GI tube infection. he said it had felt like burning or something. what do you think this is? do you think this is sensation he is feeling, because he doesnt say he feels his stomach much, and those are the only three times he said he felt it; and it seems like there were issues those three times.

  6. #26
    It sounds like he may have some sparing of visceral (organ) sensation, which is good. Have he had any other return? Is he still ASIA A? Does he have any position sense (proprioception)???

    Have you had your initial team meeting with his team at Rancho? Have you asked his SCI physician about this?

    (KLD)

  7. #27
    No, I havent, but we are having the meeting this week. He is being transfered to the icu this week, probably today actually. I asked about, Marylin Pires, but she is currently on vacation. but im gonna ask all this at the meeting this week. they got him on a portable vent, he is sating at 100%, they think that is good.
    they were able to put him on a ventilator the otherday with pressure control, (i think thats what they said) and he was able to stay on it for about 5 minutes. i guess he could breath with its assistance. they thought he would go longer because he is able to do so well with the portable respirator.

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