Help needed related to vent dependent
AnonymousApril 10, 2007 at 7:57 am
My 25 year old niece was diagnosed with GBS Miller-Fisher about 5 weeks ago. She has been in ICU on a vent and is no longer able to move anything except her lips and eyes. The ICU states their facility is not equipped to care for a patient needing long-term care. I am in the process of searching for a facility that will admit a patient that is on a vent and funding source is Medicaid in Louisiana. The outlook is not good due to lung infections, heart failure/has already coded one time. The attending physician and neurologist did say she is so weak now that any new infection could cause her death. The Vancomycian(sp) antibiotic is not making any changes in her lung condition, her left lung is totally filled with fluid and she is now unable to cough anything up due to weakness. She truly appears to be suffering and is so afraid because she can’t breathe well. We requested a family conference with the medical team to discuss her prognosis. My niece is able to “mouth” some words but is not vocal due to the trach. She states she is aware that she is dying and wants to go home. I talked with one of the doctors yesterday about this option but she said my niece would die very shortly after ending supportive vent care. Does anyone know if there is a website I can research other facilities to care for her? Also, does anyone know if a vent dependent patient can be transported long distances, she is in Shreveport, La. and lives in Lake Charles, La.? (About a 5 hour drive). If she wants to come home to die we would like to do this. Our time is limited so any help would be appreciated.
AnonymousApril 10, 2007 at 12:30 pm
Not sure how far Monroe is from Shreveport, but there is an LTACH in Monroe. St. Francis.
Here is their website
My mom has been in an LTACH since Dec 2006 (she also has a very severe case of GBS/Miller Fisher) but has to move because she no longer meets Medicare guidelines to stay there. She is moving to a skilled nursing facility. If your niece cannot go to the LTACH, there are probably nursing homes that accept vent patients nearer to her home.
I’m very sorry to hear of her condition. My mom’s case is very similar. She has had multiple infections in her lungs and bladder. They have had to drain fluid out of her lungs 2 different times. She also has coded once, but they were able to bring her back with compressions.
AnonymousApril 10, 2007 at 1:20 pm
I am so sorry about your niece. We have 3 year old with CIDP, the sister disease to GBS.
My question, are they trying to get her better. Is she getting any medication to try to put the GBS into remission? Where is she located, what hospital. We are in MS so I know a few of the hospitals. Does she have a dr. that has taken care of GBS/CIDP patients in the past.
Your email has really upset me. Please keep the faith.
AnonymousApril 10, 2007 at 1:31 pm
Go to the nearest teaching university hospital. 5 weeks is not a long time to be on a vent when it comes to gbs/cidp, but there is no excuse for her to be suffering with lung infections and fluid in the lungs if the resp team would treat correctly. vent pts do get infections, but with proper care it shouldn’t get to this point. gbs stands for getting better slowly. be positive, negative approaches are not healthy for your neice. she isn’t ready to go home, there are places that can care for her properly, the best places are university hospitals, they are usually up to date on techniques and treatments. i hope they tried ivig or plasma exchange on her already, if they haven’t they should, it will slow the damage to the nerves. please stay positive!
AnonymousApril 10, 2007 at 2:15 pm
I was going to ask what treatments she had received, but didn’t want to appear insensitive.
My mom could not tolerate the IVIG treatments so she received 5 courses of plasmapheresis.
There is hope with GBS – I have learned at least that from this forum. Alot of people have come back from very dire situations. Please don’t give up on your neice. If family and doctors appear discouraged, it will affect her immensely. We try to remain as positive as possible around my mom, even though I am about to lose it in every possible way. It really does seem hopeless at times and I know how you feel. But please don’t give up. You have to fight to get her the best treatment available. I have had to. I encountered so many doctors and nurses who had no clue how to deal with GBS. They don’t see it that often. Do as much research as you can and educate them!
I learned about neurontin on this board and told the doctors about it. My mom doesn’t complain about pain as much as she used to since they started giving it to her.
AnonymousApril 10, 2007 at 10:57 pm
Wow, I am feeling much better now that I have people to talk with about this situation. As you all know feeling helpless and powerless can cause ones thoughts to become unfocused. Now that I have some information I believe I can do something. Thank you for the resources related to long term care facilities options in Louisiana. Both places will hear from me first thing in the morning. Julie, my niece, is in a teaching hospital – LSU Medical Center in Shreveport, La. They have cared for patients with GBS-Miller Fisher before and have provided her with all of the standard treatments in order to slow down this disease. So far nothing has helped and she seems to loose a little more ground each day. My main concern today is her breathing issue. The doctor ordered xanax prn for anxiety. Having worked in the medical field for more than 20 years I know that medications ordered prn are not going to be given very often. I did get this order changed to every 4 hours so hopefully this will help with anxiety. Has anyone had any success with nebulized morphine as a breathing treatment? We use this for our hospice patients all of the time and it seems to make the feeling of “air hunger” decrease. What about steroids to assist with breathing as well. This is another drug used in the hospice world that seems to work extremely well for breathing (I know this sounds strange) but it does the trick. My problem is I know what medications work well to treat patients that have a terminal illness but don’t have a clue about curative treatment. One last question, does anyone have a resource where I can find some type of communication board or picture gram? I made a very simple one and requested the nurses to use this to communicate when ever they come into Julie’s room. Julie is able to move her lips and mouth the words “yes and no” so the board needs to be basic. Finally, thank you all for caring and helping me with this tragic event. Our family is devastated and depends on me to help them understand what is going on medically. I am grateful that I can offer the family this type of support but it is difficult to keep upbeat when I have no one to talk to about this. I am so glad you are here to listen and offer suggestions. I apologize for talking so long today; promise I will not ramble on so much from now on. Thanks for now-I will keep you all posted on this journey as time goes on. Faye
AnonymousApril 11, 2007 at 8:59 am
Faye, go to the main page of this site, they have communication cards there, they are highly recommended. don’t apologize for long posts, its ok, we would rather have you post long ones and get the information that you need then to have you suffer through on your own. i had to be put on breathing treatments while i was in the hospital on various occassions, it helped to keep me borderline-fine line between being vented and not. anything to keep your niece comfortable can and should be tried. just know that regular steroids is not recommended for gbs pts. any medication questions you come up with that you know work in the hospice unit is worth bringing up to the dr. and more info-keep asking your niece if she has pain-gbs does come with pain quite often-alot of drs don’t think so, but it does, and sometimes there is none. as zinnia mentioned, neurontin is good pain control, narcotics don’t work all that great on nerve pain neither do ovc nsaids. make sure you take time for yourself, don’t get burned out, that wouldn’t be good for you or your niece. take care.
AnonymousApril 11, 2007 at 9:33 am
I’m so glad you posted again. I was so upset at your email I called my friend Jerimy and talked to him about it. He’s been on ivig for over 10 years, not sure how long he’s had cidp/gbs.
You say they have started her on the medications but nothing is working. Can you be more specific? What have they given her, how many grams and how often? How many days did they give her ivig, if she got that?
Thanks again for your post. I am so sorry for you and the family. I do believe in miracles, I have a 2 year old to show for that.
AnonymousApril 11, 2007 at 1:14 pm
Like the others have said (with far more experience than myself) don’t give up on your neice. I recently came to Italy to care for a 35 year old man recovering from a bad case o GBS. He was on ventilation for a long time, coudln’t talk or move for 4 months, had to have daily blood transfusions, etc. He is now walking, talking, living. He still has struggles, but is not in a hospital anymore.
I would seek out another hospital immediately, your neice shouldn’t be suffering so much.
AnonymousApril 11, 2007 at 8:00 pm
First off you need to know that people do not need to die from GBS/CIDP. There are treatments available to halt the destruction of myelin. Has your neice received IVIG, plasmapheresis, steroids?
From what I know about a vent, it is common to get an infection from being on one. My grandma was on one & also got a bad infection. Vancomyacin is the mother of all antibiotics. It’ll treat just about anything. Are they doing blood tests on your neice while on the vanco to monitor her “peaks & troughs”? This means that they should be taking her blood before starting the antibiotic & after she is done with it. This will help to determine if she’s getting enough & how long it’s lasting in her system. This is VERY important to do! Even if they do the “troughs” or the “peaks” and not do both at LEAST 1 of them MUST be done!
My daughter was on Vanco in the fall due to a suspected port infection. That’s how I know about it.
Also, some people take a LONG time to get well enough to get off of the vent. It doesn’t mean that she’s not going to get better. It just means that she needs more time.
The reason why her lungs are filled up is because she can’t cough anything up. She can’t breathe because of the fluid in her lungs. If they can figure out a way for her to cough up the fluid then I bet she would feel better. I’m not even sure there is a way to do this but you should ask.
I feel that your neice needs to remain in the hospital until the lung infection has cleared up. I would not send her to any long term care facility with such a serious infection.
AnonymousApril 16, 2007 at 9:22 am
Not sure if you’d want to try this or even if the dr will. But I do work at a Medical Care Facility(nursing home) and we have patients who have they’re lungs fill with fluid and they are unable to cough up phlem therefore we have to use a tube hooked to a small machine and suction out their lungs. I just thought it may help. Wishing you all the best and good luck.
AnonymousApril 18, 2007 at 4:17 am
in the early days i was being suctioned all the time. the nurses would hear me start to rattle and ask if i needed to be suctioned. I came to hate it but better than letting it sit in there and lead to pneumonia. I was also sat in a chair twice a day without fail – even though it meant being moved with ahoist and at first i need a neck brace to support my head. I was told it was improtant to get out of bed and upright to keep lungs clear too. I presumed these were standard practices so never mentioned it but maybe not
AnonymousApril 24, 2007 at 6:01 pm
I too send my best wishes for your niece. Until I read a later post, I was going to say that steroids work great. I have bad asthma and when it gets so bad that I can’t breath, they give me a shot of steroids and the dr. said that dries up the fluids in my lungs. I am not as experienced as others so this may be all wrong.
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