AnonymousNovember 22, 2007 at 3:11 am
My Mom is in a very complicated situation, first as a lung cancer patient in stage IV, and went through one and half cycle of Chemo-therepy in Sep this year. She was badly coughing for a week and then suddenly cannot move her legs, arms and eyes. Docs described it as one of the GBS called Miller Fisher. She has been in the ICU for three weeks and got the IVIG at the first week. she had no improvement currently and unfortunately got the Vent-acquired pneumonia. After exausting all the anti-biotics, the docs seem to giving up on her and planned to send her to a nursing home.
As i understand, her cancer is in a late stage but maybe not that last. If she could somewhat improved with the GBS, she may still have more time. The things that are really upsetting me is she had no chance to express herself and open her eyes although she is conscious and her vision is OK. The Doc said she needs to wean the Vent first so that she could speak. I am very concerned about that,
Anybody can help me at least on how to facilitate my mother and give the chance to speak her last words.
AnonymousNovember 22, 2007 at 7:18 am
Brian I feel your pain and already praying for your mom. All you can do is give her to God and ask for his will to be. I am sure your mom knows the love her family has for her and you know her love for you. Trust me Brian you will be amazed at the power of prayer. We are all a family here and you and your mom are part of our family. May Gods blessings and healing powers be with your mom and family (Steve)
AnonymousNovember 23, 2007 at 10:11 am
I was on a vent for 6 weeks then they put a trach in me and started getting me to breath on my own. It was a big plus to be able to talk. Alot thought I never would get off the vent but thank God I did. My prayers are with your mom and you that you may be able to spend some quailty time together. Oh and I also had pneumonia but it was not vent aquired. I had 8 bronciscopes (sp) while in ccu.
Gbs onset March 2007
AnonymousNovember 23, 2007 at 10:12 am
Hi Brian, Welcome to The Family. I’m sorry to hear about your Mom, she sounds like a Strong Souled Lady. If she is on the vent without a trach, she would need a trach to be able to talk, a temp vent tube won’t make it possible for her to talk. Please make your feelings known to the drs, don’t let them give up on her at this point. It takes longer to recover from gbs than just a week after ivig is given. The ivig isn’t a cure, it only stops the progression of the damage to the nerves. Have they brought up plasma exchange for her? some people don’t respond to ivig, some people respond to pp better. She won’t just recover and be better in such a short time. Get a dr who is well versed in gbs/mf. Not All drs know enough about gbs. Remember you are your Mom’s voice right now, use that voice in the way you know she would want you to use it. Be her advocate. Just because she has lung cancer doesn’t give the drs the right to blow her off as they seem to be doing. If she is in that bad of shape insist they keep her in icu until her pneumonia is handled and she is either weaned off the vent or a trach is put in. Recovery from gbs/mf is a slow process as it is for any type of gbs variant. Please keep us updated on her progress. Take Care, Your Mom and Your Family are in My Prayers.
AnonymousNovember 23, 2007 at 10:26 am
I have been trying to think of an answer since you first wrote, but I just dont have anything helpful unfortunately.
If your mom is still at the stage where the vent is breathing for her all the time, unfortunately there is nothing they can do to help her speak. Once she starts breathing on her own, and the vent comes into play to help our less, then they insert an inflatable baloon of sorts, and she will be able to speak – but not until then unfortunately. The best way I have found, is to get huge card boards (the same as they used for school projects) write things like ….. YES / NO / PAIN / TURN ME / SUCTION / TOO HOT / TURN PILLOWS etc. so that if you point to one she can either slightly nod, or lift a finger, or blink or whatever it is she is able to do. The words etc will change as the days go by as her needs change.
One thing that worries me is that MF GBS starts in the head and moves down, not starting with legs, arms and head. Many of us started that way but did not have MF , and one thing to remember that if the head e.g. etc is affected in GBS, does not mean that it is MF variant. However, it may have first been her head and then decended, I just thought I would mention that to you from the way I read your post.
AnonymousNovember 23, 2007 at 8:21 pm
Welcome Brian! My prayers are with your mom and your family. I can understand what you are going thru. Remember your mom is trapped in her body and she can hear every word you are saying. Hearing all the noises in the whole hospital. I had the double vision and was not able to read or watch tv. You might want to read to her. Maybe a good humorous Christmas story. That is what my friend did for me. That helped make my day go faster and I felt safe when she was there with me. She let me get plenty of rest and stepped out for her meals when I got mine or I was sleeping. She brought someone in to wash my hair and set my hair for a holiday present. That was a great day and it made me feel really good. You might want to read to your Mom or be there to make sure the tv is on for her favorite tv programs so she can listen to them. Don’t ask a lot of questions that is exhausting for the GBS person and don’t touch them alot that might cause pain. See what she tries to respond to. The GBS will reverse itself with the help of the IVIG (which did not work for me) or the Plasma Phresis that will wipe out all the IVIG. I am not sure if either one of them can be given with Chemo. Talk to her Doctors and have them explain to you what to expect. What your options are. They also might be following the guidelines of her insurance company also. I was in the ICU for a month before the GBS started to reverse. After it started to reverse I got strong enough to be given the trache. I still was not able to talk. I was lucky that my eyes were wide open and could not shut. Your mom is in a very silent world not being able to communicate. TALK, READ and be yourself. Read articles out of the newspapers and off the internet that you think she would enjoy hearing. Keep everything possitive, humor is going to be the best medicine. Read outloud to yourself. Tell her what you have been doing and who you have seen. Tell her about us on the forum. Take in a daily joke to tell her. Get on a routine and tell her that is what you are doing. Tell her about the change in weather. Keep her mind thinking of possitive things. Tell her about a family trip that you were thinking about that made you smile. She might not be able to smile today but she will feel warm inside that you have not given up on her. Now that she is not using her sight she will be more in tune with your voice. She will feel your mood, strenght in your voice, your hope in what you say. There might be a liason in your area so contact the GBS foundation. They might be able to send you information and so visit your Mom’s room. Some times just talking to someone that has gone thru this gives you hope that it will be ok. I did go to a different unit once I had the trache so they could wean me off that. Then I was able to move they gave me occupational and physical therapy to get the muscles moving. The nerves heal when she rests, so make sure she gets plenty of rest. Don’t be surprised that she might want to sleep 20 hours out of 24. Have people from your church or family send her cards to the hospital and decorate her room with them. She will not be able to see them but you can read them to her and describe the picture on the card. When others come in they will comment about the cards and decorations. I hope that she is moved to her new room soon. That is a step in the right direction. GBS does mean Getting Better Slowly! You might not be able to use the cards for words yet but that is a life saver and a time saver later. Is she able to move her head to the side or her toes? Right can mean YES and left can mean NO That way you can atleast ask her Yes and No questions. Be inventive and be patient! Vent here and ask as many questions as you want here on this forum. Take care of yourself. We rely on our caregivers so much. Be strong!
AnonymousNovember 24, 2007 at 3:38 am
Thank you so much everyone. This really gives me some light in the dark days. I also heard a girl recover fully from a serious GBS, first failed on IVIG, but had a sharp change after Plasmapherisis. Today I raised this point which had already been ruled out by the attending neurologist when my mom was in the ICU. They still thinks more risks than benefits.
She is actually in a public hospital called Bellevue in NYC. Since she is visiting me, so she doesn’t have any medical insurance, which is also a worrying point to me. I am still not quite sure whether the docs will have different thinking on the treatment based on your insurance condition. We were forcefully discharged from the ICU, even she is in a high fever of 105 F. She is now on the medical flloor, where the vent has big noise like motorbike.
It seems her temperature went down today. The docs still thinks transfer her to a nursing home in Roosevelt Island while I insist not going anywhere unless she is quite stable.
I also hate the sense that the docs are giving up and discharge you somewhere waiting for the moment.
I want her to live as long as possible without pain and have chance to express herself in the near future.
Thank you all again.
AnonymousNovember 24, 2007 at 10:24 am
I am sorry to hear about your mom. My dad’s GBS case seems somewhat similar- they think he has a varient of Miller Fisher. He has been trached and on a vent since the 2nd week of October. He recently acquired movement in his neck and jaw- has always had movement in his eyes – but beyond that, nothing. They moved him out of NYU Medical Ctr and to a rehab in Queens called Silvercrest. Then he got an infection about 3 weeks ago and is now in NYHospital Queens. He seems to be stablizing but who knows…
As far as the doctors are concerned, have you spoken to a patient rep or case worker? At NYU Medical, we were having issues with the nurses and communication with the doctors and the patient rep helped us tremendously. I suggest you seek them out if you haven’t already. They can also help you with insurance issues and locating the best possible rehab center for her.
I’m sorry- I misread your original post and initially offered advice on how to communicate with her that now is not too helpful. I have deleted that part of my post…
AnonymousNovember 25, 2007 at 10:57 am
Thanks Jamamma,and everyone again. I will try to find a patient rep(I am not sure whether they have this rep, only heard there is a department called patients advocacy. But I will try anyway.)
My mother seems to control the infection over the weekend with fever going down a little. The docs said they will draw her blood again to build the culture and see what the situation is.(Is it normal that they draw blood twice every day, cause I am worried about it based on her generally weak condition). Docs also suggested to give her a procedure(PEG? Tube, a tube directly into the stomach to feed her instead of the current one in the nose). Is that safe? I am also worried about her new bedsore, cause the nurse here in the medical floor is not as good as those in the ICU. They don’t turn her from time to time unless I push them to do so.
The most upsetting thing to me is that she was trying to speak to me again yesterday, moving her jaws and mouth very hard, but no sound. She is kind of less willing to communicate with me by moving her feet or squeeze me (very weak move), although I can feel she is very concious.
AnonymousNovember 25, 2007 at 11:05 am
you have to keep after the hosp staff or they will never do their job. speak to the ceo about the lack of standard acceptable care [bedsores] & be sure he knows you will report the hosp if steps are not taken. the squeaky wheels get oiled. the rest do not. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousNovember 25, 2007 at 1:15 pm
Hello again Brian! I am so concerned about your Mom and her condition. I am upset with the healthcare system. Why was my care so well done and your Mom’s care not up to par? I think they can get away with it and attitude and training. Be there checking up on them. The squeaky wheel does not have to be LOUD and RUDE but just enough to remind them you are going to ask that as much is done to keep your Mom comfortable as possible. The stomach tube is easier on the patient. Anythinig you have to have in your nose or mouth is uncomfortable. There is risks with any of those things but the PEG makes the daily routine easier too. Both need to be cleaned or flushed several times a day as does the trache. It does sound like she is getting some movement back? Which is a possitive thing. Just use what you have to communicate. Be possitive and patient with her progress! We can not say that enough. No matter how frustrated you are multiply that by a few dozen more and that is what it feels like to her being in this condition. Remember she can hear you so that is right now your best line to keep her possitive. Laying there is scarey. Each person that visits should identify themselves. Even just that much will let her know who is around her. They should be explaining what they are doing also. Right now any communication with the staff is a visitor in her world. If they sound like they are smiling with their voices that will mean so much to her. I would talk to her about the weather, news around the world that is interesting stories to her. Also talk to her about religion and the holidays you are preparing for at this time of the year. Let her know you brought in some decorations for her room. If you have a prayer list at your church make sure she is on that list. I had many people add me to their prayer lists. You can also give them your address and have them send you Get Well cards! It is amazing how many will send cards. Have you been able to learn from her, if she is in any pain? If no pain it would be nice to have either yourself or one of the girls to give her a foot massage and put moisturizer on her feet. The hospital can supply the bottle of cream. Also they can give you some very nice cream you can put on her hands and elbows to stop the dry skin. Just this daily hand cream will prevent cracking and itching. Over the period of time she is in the hospital it will be better than sending her to the spa for a pedicure. It also lets her know that someone cares. Comb or brush her hair daily for her. That will let her know you care how she looks and she will know that she is presentable. When I was in the hospital they would give me these dry shampoos that felt good but all they were was a fancy shower cap with powder in them and warm water. I thought they were giving me a shampoo and it made me feel so good. 5 weeks later I learned it was mixing with the oil in my hair and I now had cookie dough for hair. They called it GBShair. After that they gave me a real shampoo once a week which made me feel like a Queen. Tell her she is the Princess or the Queen and do things that she will enjoy. it will make her feel human and let her know you care. Also ask the staff what kind of things are available for patients. Some things like reading them their mail or bringing her a magazine or writing a letter is things your family can check into later. Volunteers are an asset to any patient. If she liked poems buy her a new book of poems. It will give her something to look forward to hearing. Make her day interesting! A joke of the day! Make it interesting for you too! The fact that they are ready to move her to a new unit and that she is able to fight an infection is good news. It tells me her body is trying to protect its self and starting to work properly. Let us know how things are going. Let her know we are here with well wishes and prayers. You and your family are in our thoughts! VENT here if you need to! Stay strong!
AnonymousNovember 27, 2007 at 3:33 am
Thanks, Ladykitusa and everyone, I’ve read all your warm words and regards to my mom, and she is very thankful to all of you. I also found the patient advocacy and try to get their help. It really worked, at least the nurse and the other stuff came to ask me if anything they can help ,just go and tell them.
My mother still got a little fever, sort of around 100 F, and the doc said only after she is normal in temperature can she have the PEG tube procedure. I tried to ask the attending to seek a second opion on her GBS(MIllerfisher), but he said the current neurologist is the best one in this hospital(Bellevue), there is no need to chanllege her decision unless I transfer her to another hospital. So they still don’t think about Plasmaphresis, basically they have nothing to treat her now in terms of the GBS.
I also asked the nurse to give her the special air matress in order to avoid worsening of the bedsore, but her answer is that the wound nurse doesn’t think it’s bad enough to have that. Why they have to see problems coming and then treat them, instead of doing something beforehand?
AnonymousNovember 28, 2007 at 12:32 am
Brian, Insist on the air mattress! Insist on proper wound care by all the nurses. Turning your Mom every 2 hours is mandatory! Bedsores can lead to alot more problems in a really short time! No patient should have a bedsore if they were turned and cared for properly in the first place. Don’t take one drs opinion of another dr as the rule-insist on having a different neurologist involved. Your Mom is qualified to receive medicaid if not both medicare and medicaid, especially with her previous health issues. Go All out and get your Mom the Best care in the hospital, if its not good enough in your opinion, than look into transferring her to the best place for her conditions. Don’t hold back, you might not have a second chance tomorrow, and I wouldn’t want you to go through the what if I had done this, that or the guilt. You Both are in My Thoughts and Prayers. Keep Up The Good Work!
AnonymousNovember 28, 2007 at 1:39 am
Thanks to all. I finally insist on getting my mom the air mattress and made it this afternoon. The most encouraging thing is that my mom can half open her left eye and move a little both eyeballs this morning, which I think is her new gaining-back. She was trying very hard to speak to me, which is really upsetting cause I can not figure out.
The resident doc gave me the information about her CT scan yesterday, saying that nothing seems to be the infection source, and not sure about her blood counts to be low or not. Sometimes they just give totally contradictory infromation. The docs here in this hospital really so-so, the nurses even worse. I am thinking of transfering her to another hospital, but based on her no–medical-insurance status, I have no other choice.
Last 2 questions are: Can bedsore heal? How to speak on a vent, at least whisper?
AnonymousNovember 28, 2007 at 11:42 pm
I had MF/GBS in 5/99. I spent 3 weeks on a vent in ICU, 4 more mos. in hospital. I had 3 iterations IVIG, which did not work for me, followed by 5 iterations PP, which finally stopped the progression of damage. I had pneumonia 3x altogether; and multiple other life-threatening side-effects.
To the very best of my knowledge, as others have already stated, speech, even a whisper, is not possible until a trach has been installed. Your mom can then be weaned off the vent, even for short periods of time (like 1/2 hr), the trach can be capped, and she can speak. It is not an easy thing to do. Her lungs tend to fill with mucus, that’s why they suction her repeatedly, and when the trach is capped and air again passes over the vocal chords, producing speech, the mucus tends to get in the way and cause coughing and choking. Prepare her for this before you just let it happen!
From my viewpoint, you’d be better off right now not to try to rush the speech thing. I know she wants to tell you things, and from my own experience, she probably thinks you should be able to read her lips. She doesn’t realize that her mouth probably doesn’t work like it used to and that her lip movements aren’t flexible enough to produce readable characters. Try to explain all this to her GENTLY, and then ask her to stop trying to talk and just respond to your questions by squeezing your hand, weak as it may be, rolling her eyes, or whatever she is capable of. Assure her that just as soon as it is humanly possible, you’ll make sure she is given the chance to speak. Then come up with all kinds of yes/no questions, being inventive and resourceful.
As for her treatment, unless you insist on the best the staff can do, she won’t get it. Be there, or have another family member(s) take turns with you so that she is seldom alone. If the staff see that they are being watched and reported on it sometimes makes them more industrious; that goes for doctors as well as nursing and therapist staff.
Reaffirm your belief in an all-knowing and loving God who promises to “never leave you (her) nor forsake you.” Also, tell her that when you can’t see His Hand, Trust His Heart!
Our thoughts and prayers are with you.
AnonymousNovember 29, 2007 at 4:31 am
I just wanted to let you know that a fever is an unusual but not unique symptom associated with GBS/CIDP. I have had a fever for 18 months now and spent almost an entire year trying to diagnose what was causing it. I’ve had hundreds of rheumatological and infectious disease tests that have showed no cause of the fever. It wasn’t until I finally made it to Johns Hopkins that my neurologist said that it’s associated with the inflammation of the disease. Trust me, 14 doctors were convinced it had nothing to do with GBS/CIDP and assumed I’d caught something in the hospital, or an additional autoimmune disease reared up. My fever IS responsive to IVIg and has finally been below 100.7 where it has resided for quite a long time. In addition, my fever goes up during a relapse so it’s pretty clearly associated with inflammation. I don’t know if this is what is going on with your Mom but I hope you don’t waste an entire year doing tests, or skipping treatments because of the fever if it turns out to be inflammation due to the disease.
Good luck with a quick diagnosis,
AnonymousNovember 29, 2007 at 11:16 am
Brian your question was [B]Is there any medication that can treat the bedsore, and can it heal?[/B] The wound care team is there to be putting on bandages over the areas that are open. They are trained to spot any infections. They should be having the staff apply medicated creams daily on the areas that the skin is breaking down. Areas that are in contact with the bed and rubbing consistantly. Backs of arms, buttocks, shoulders, back of head, back of heels and between the buttocks from being moved from side to side that tears the thin skin. Using pillows to lean her from side to side and lift up the arms from the bed with pillows. Once she is able to do more movement herself then you will see other areas that she will rub just with energy from wiggling her toes or sliding down the bed if it is elevated too high. Elevation of the foot of the bed will help take pressure off areas too just like chaning the elevation of the head of the bed. They even took weekly photos for my files of my bed sores. They measured them also. That way it was not depending on anyones memory. They could show the results they were healing or that another area appeared during this time.
About the speech that will come as she gets stronger. Right now the amount of strenght in the diaphram and lungs is very weak to support speech. The others are right about not rushing that phase of her recovery. Use the hand signals and any movement of the eyes or mouth for different words she will use. Also the hospital should have a chart you can use to communicate with her. Now that she might be able to see what you are pointing to she can let you know you are pointing to the correct picture. For example these charts have pictures of Pain or No pain they can point to. They also have letters to spell out words.
I am glad she is able to start opening her eyes that will really help with the fear and loneliness. If the hospital does not have the communication chart they are available on this site in the link for Our Store. Along with some other pamphlets for patients and caregivers to read and get good ideas. Remember keep things possitive and make a big deal about the disease reversing and things coming back. It will be slow and as they add Occupational and Physical Therapy to show or remind her body how to do things again she will start to get frustrated it is not happening fast enough. Show patience and just remind her that GBS also means getting better slowly. It is hard to put a time frame on just how slow, slow is! Keep things possitive and watch for depression. That is when you need to show her you are not fearful for her and that the progress she is making is possitive progress in the right direction. Also remember that the number one thing you will never understand is that fatigue means being more than just tired. It is more than just being exhausted. It feels like every movement is draining your battery that takes days to recharge. Just having company or listening to a conversation can be exhausting. Later chewing your breakfast can cause you to fall asleep during your breakfast. You have to see the humor in all of this recovery. The patient sees it as failure daily they feel like an infant not being able to break out of this body. The mind is working overtime wanting to get home and do everything for theirselves. There will be many set backs but there will be a big difference like learning to walk like an infant and just trying what works or like the adult she is and her memory knows how to work the body is not responding. Being able to use a sippy cup with handles to help balance their drinking cup will be a BIG DEAL and show independence. Make a big deal about it! Those tiny things all add up to recovery. Just standing or sitting on the edge of the bed might seem like a minor task to you but to her it will be one step closer to getting back home and gaining her independance again. Put yourself in her position and see how big of a deal just being able to open her eye half way must feel! She can see the room around her again. See the smile on your face and see the fear on your face and read your body language now. You should start to celebrate life now! I am happy for your family. What a great gift to see her GBS is starting to reverse. She will now be like a child and discover daily things feel different or she can move that finger or arm or foot a tiny bit farther on Friday than she could on Monday. Keep a Journal of her progress so she can see she is making progress. You might want to ask if her vision is blurred or watch that she is blinking or able to make tears. Eye drops will help if she is not able or her eye feels dry. The nurses might of already ask her these questions, check with them. I had double vision for 10 weeks while the muscles are too weak to allow my eyes to focus. I seen two Doctors, double the number of Nurses, Two food trays and four feet at the end of the bed. It was hard to watch tv because everything was double…..some days over lapped and some days two whole tv screens. It was also hard to focus on a person face because they had four eyes! Some days they had two heads! Just be creative and deal with the important things and laugh at the weird things that will happen. Once she is strong enough and gets that trache valve put on she will talk non stop! Be prepared! Take care of yourself!
AnonymousDecember 5, 2007 at 3:14 am
my mother could half open her eyes now(left is better thatn right),and move her neck, jaw, tongue freely(I doubt whether she really lost it), something really new is she get some strength on the legs(right is better than left). She is more conscious and responding to me now, but still in a low-rate fever. and docs failed to give her the PEG last week due to the swellon belly(tube in the nose for more than 3 weeks).
My dad and I took more care of her appart from what the lazy nurses did here and it seems that her bedsore also somewhat under control.
I don’t know how fast (far) she can go, compared with the spread of the cancer.
never think too high, just wish she could speak and talk to us before the day comes.
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