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Thread: few more questions...sorry!

  1. #21
    Once again, I'm not much help. She's scared for them to try taking her off the vent because she's afraid she'll suffocate. What a helpless feeling, when your ability to breathe is in someone else's hands! Usually when they wean someone, they let them breathe on their own as long as possible. This will be a great effort probably, if she can even do it. Then they increase the time to build up the muscles. I don't know if they will take her off the vent to do this or just slow down the respirations on it. They did some sort of scan on my diaphragm which showed it was working partially, maybe they've done one on her. If she can't breathe on her own, they will blow air thru her trach until they get the vent hooked up again. She won't suffocate, but it terrified my roommate and still does. She's a c2 still on a vent at home, can breathe for 20 min's without it. Eventually they got a different cuff on my roommates trach which enabled her to talk. At first she talked between breaths; now she talks normally. Encourage your friend to hang tough during the weaning stuff if she can, it would be very hard but she sure needs to give it a go in my opinion. Good luck with the fundraising-Tell her to get a mean lawyer!!!!!

    C5/6 incomplete, injured Aug. 2000

  2. #22
    Tammy, you are asking really good questions! Weaning from the vent is very hard for people, both emotionally and physically. This machine has been breathing for her and it would be scarey to take that away. A respiratory therapist will be with her and she needs to be reassured that her oxygen levels will be monitored- called oxygen saturation. It is also very tiring, physically, because she has been critically injured and is weak. Other muscles that usually aren't used will have to assist her to breathe. They usually adjust the vent to see how she does with initiating breaths on her own and then test her on her own for short periods. It usually takes a while to build up the strength to go for longer periods. And would probably be put on an assistive breathing device at night to give her a rest from the work of breathing. It is amazing how weak the body becomes after traumatic injury.
    We had a benefit for my brother after his accident. It was at his favorite bar/dance club. Three bands played, free. There was someone at the doorway to collect entrance fee, I think it was twenty dollars. There was an auction, with things friends had donated, that people had fun bidding for. There was a ping-pong tournament, there was dancing. A very good friend mc'd the affair and gave people an idea of costs of rehab, wheelchairs, etc. One good idea was the placing of a scrapbook at the entrance so people could write down their well wishes and thoughts, my brother really enjoyed that since he couldn't be there. Someone even set up their video camera so he could see everyone. Remember, the more fun everyone has, the more money for her benefit! We had fliers all over town, in the paper, on the radio. The bar itself made more money that night than they ever had! The benefit raised about $25,000.00, which really helped with buying a wheelchair van. Some people who didn't have funds, gave chits with a service on it- like help with modifying his home, building a ramp, bringing a meal, grocery shopping, etc. Jim's friends were certainly good friends, like you have been. We started a special bank account, so people could continue to contribute as they could, still had contributions up to 6 months later. Be sure to get her parents involved, their generation of friends will likely want to contribute also and have maybe more to contribute than college age. No offence, please, just being realistic! Good luck! Debra

  3. #23
    Senior Member kate's Avatar
    Join Date
    Jan 2002
    bellevue, wa, usa
    Tammy, you're a good friend. Some of us know firsthand what it feels like to have somebody like you advocating for us while we're overwhelmed--and I'm speaking now for Heather's family. When my husband got hurt, knowing that we had friends out there willing to cover our backs was HUGE.

    Do her parents know about this site? It's so important to have information, and there are lots of parents here . . .

  4. #24
    Could anyone tell me what my friend is going to need when she gets out of rehab that her insurance does not cover? Does insurance pay for ramps, wheelchairs, voice-things for the computer, etc?

  5. #25
    Tammy, this is very individual based on the specific insurance policy. If there is any plan for a suit against the other driver or for coverage under their insurance, this also needs to be taken into consideration.

    Based on that, it is a rare insurance company (other than VA or worker's comp) that will pay for the following:

    Van (if she plans to go to work or school, DVR may help with this, but not always)

    Modifications to the home (ramping, elevators, ceiling track lifts, stair glides, bathroom modifications, addition of second exit for safety, etc.)

    ECUs (environmental control units) to run a computer, dial/answer the phone, run a radio, operate bed controls, etc.

    Computers and computer modifications (although as above, may be covered by DVR)

    Very few insurances will cover any of the attendant care she will need at home, although she may have some time-limited (a few hours daily) initial coverage for in-home nursing care. This rarely is continued more than a few weeks after discharge from rehab though.

    Most insurance will pay for a wheelchair and cushion, although they will usually try to avoid paying for the type of chair she will probably need (very expensive), and may not pay for a replacement or repairs as actually needed. They will usually pay for a portable (wheelchair mountable) ventilator, but often not for a back-up power supply and sometimes not for a back-up ventilator for the home. They will usually cover medications and supplies (except Medicare). Many insurances will not pay for bathroom equipment either (grab bars, commodes, shower chairs, raised toilet seats, etc.) Some will cover arm braces, others will not. Some will cover a back-up wheelchair (manual), some will not.

    Have you heard where she is going yet? Have they appealed the Craig decision by the insurance?

    Once she gets to a good SCI center, her case manager and therapists should be able to find out exactly what will and will not be covered. Then you can plan to hold some fund raising activities to address those items that are not covered. Just be sure that any fund raising is done in such a way that you do not interfere with her eligiblity for SSI, Medicaid or other need-based programs.


  6. #26
    Senior Member
    Join Date
    Jan 2003
    Madison,Wisconsin, USA


    Tammy, just like the nurse said-different insurances cover different things. If you have the benefit, put the money into a special account in the bank, other than her immediate family. If they have to use any Medicare for her expenses that benefit money could preclude some services. I'm hoping the family has a lawyer by now, he/she could advise on this. Obviously, the account has to be held by a trustworthy person or put into a special trust that isn't invaded by Medicare/Medicaid. Just to give you an idea..we were refused a back-up manual w/c, shower chair, any exercise related machines,any computer renovations,etc. A shower chair costs about $1500.00, so you can see that these things are costly and the benefit would help tremendously. As the family becomes more knowledgable in sci and her status evolves, they can decide what is best. Sometimes just modifying the house so she can go home is the most pressing, and getting a good wheelchair. A good rehab will steer them to what she will need.

  7. #27
    Update: Its been a month since the accident and Heather is still in the ICU. She has not been moved because the insurance company is giving them a hard time. I guess they are fighting to get her to Craig. She got her halo removed and is now wearing a neck brace. She can eat apple sauce and little things. She can also kinda whisper words. Does anyone know why she has to wear the neck brace now? When they take the halo off does that mean her neck is stablized? Does it hurt when the halo is taken off? Also, if she is eating isn't that a good sign? Will she ever be able to eat whatever she wants? Since she is whispering does that mean there may be a possibility that she will be able to breath on her own? They did do a test to see if she could breath on her own and she cant. I am going to see her thursday or I will probably have more questions then.


  8. #28
    Tammy, I assume that she is still on the ventilator. This is the reason why Heather is whispering. There is probably a leak valve on the respirator that allows air to go from the tube upward (as well as downward) and the air passing through the vocal cords produces her "voice". It can probably be adjusted to be stronger but if it is enough to communicate with, that is good.

    Weaning off the ventilator is frightening because Heather has had a machine pump air in her for the past month. She will be short of breath. She should understand that it is always like that and that shortness of breath itself helps stimulate the phrenic system (the part of the nervous system that is responsible for breathing) to be stronger and produce greater activity. If she is able to get off the ventilator, this will allow her much greater flexibility in terms of places to do rehabilitation in and also greater independence. It may take several tries and many days for the weaning process. Support by family and friends is crucial during the process.

    Many people on this site have been involved in fundraisers. The most important part of fundraising is communication, getting the word out to Heather's friends, family, and others who have have known her. It is very useful to have a web site that information can be placed regarding heather. It is also important to make sure that you have a good list of all the addresses, email, and telephone contact information, so that you can let people know.


  9. #29
    Does anyone know why she has to wear the neck brace now? When they take the halo off does that mean her neck is stablized?
    1 month is very quick to remove a halo. They usually stay in place for 10-12 weeks. It takes at least 3 months for the bones to heal sufficient to be strong without a brace. The other brace she is in now will probably be continued at least another 1-2 months.

    Does it hurt when the halo is taken off?
    It is usually not very painful since scar tissue has surrounded the halo pins. It will pull and be uncomfortable, but this goes away very quickly. It is usually done without any anesthesia or sedation. Putting the pins in can be painful, and is usually done with sedation or anesthesia.

    Also, if she is eating isn't that a good sign? Will she ever be able to eat whatever she wants?
    As long as she has had swallow studies to prove that she is safe to eat with her tracheostomy, this is good, although it does not indicate any neurologic return. It is better psychologically and physically to be able to eat normal foods. I would suspect that as long as she has the tracheostomy that they will have her on certain soft foods only, but down the road most people with a trach are allowed to eat all regular foods.

    Since she is whispering does that mean there may be a possibility that she will be able to breath on her own? They did do a test to see if she could breath on her own and she can't.
    There are several possibilities (it is difficult to tell without more information). They could be trying her on an uncuffed trach, which is what most people with chronic tracheostomies on ventilators learn to use. She could have a leaky trach balloon such as Dr. Young described, or they could be trying her on a "talking trach" or Passy-Muir valve which allows a person to talk when the balloon is deflated for short periods. Many people who cannot breathe on their own (like Christopher Reeve before his recent surgery) can talk. The biggest advantage of this is her improved ability to communicate and be in charge of her own care.

    It would also be important to know what kind of "test" was done to determine she cannot breathe on her own. Simply taking her off the ventilator and seeing what happens is not a definitive test, nor is an EMG of the phrenic nerve or even fluroscopy of the diaphragm. Can you find out what test they did?

    Has her family gotten an attorney yet? It sounds like she needs one. She needs to get out of ICU and into an appropriate SCI rehab program now. Delay is not appropriate and could have many adverse consequences.


  10. #30
    I went to see Heather tonight. She is looking really good. She told me that it hurt really bad when they took her halo off and that she has had a non-stop headache for the past weeks. She ate a little bit of a porkchop tonight and she has been eating a few other things. Last week they were having problems with her heart. She passed out a few times and she said her heart beat 3 times in one minute. Because of this she now has a pace maker. Her mom said that everything is moving very slow with the rehab center. It is for sure that she cannot go to Denver. I am guessing the insurance declined her the second time. They are now looking at a place in philadephia. (Shriners maybe?) Does anyone know about this place? Heather was telling me that her first night in the hospital cost $50,000!!! I cannot believe the charges! She also said that her insurance wouldnt let her go to Craig b/c its 300,000 dollars to go there. That is unbelieveable! She had her nurse show me her burn on her arm tonight. The first hospital she was at put the IV in wrong or it broke--I am unsure. It caused 3rd degree burns on her arm and it is a big black spot. Her legs and feet are also twitching. What does this mean? Also, why can't she hold up her head or keep it straight without a pillow holding it up? Will she ever be able to move her neck? I am not sure what test they did to see if she could breathe on her own. I know they did a test to see if there was any movement in her diaphram and there wasn't. I think they were going to take her off the trach and see if she could breath. I am sure they have an attorney by the way Heather was talking. She said they have to do something so they can pay all the bills. I am in the process of looking for a hall that will donate a night so we can have a benefit for her. It wont be until the spring/summer because I am in school. I have talked to a friend's dad about having his band play at the benefit. I think that with everyone helping we could pull it off. One more question....if I were to start a website for Heather how would I do that? Is there a charge?


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