Can Someone Please Help Walk Us Through This?
AnonymousJuly 28, 2006 at 6:21 pm
One year ago this past April (2005) my husband, Billy, had back surgery. After the surgery he began complaining of a different kind of pain. The pain began in his hips and traveled down the backs of his legs. A few months later his feet began to tingle and become numb. Doctors shrugged it off as arthritis and began upping his medication. After the first of the year, 2006, sitting, standing, walking, and laying became harder. No matter what, he couldn’t get comfortable. Then the pain began to travel down his left arm, causing numbness and tingling in his fingers. Doctors shrugged this off as carpel tunnel,and still tried adjusting his medication. About a month ago, he started complaining about being tired. Walking had become even more difficult and the pain was unbearable. He was having trouble eating and keeping the food down. To the point he was bearly eating at all. Bowel movements were subsiding, and try as he might, he just had no energy. The Doctors finally decided to start doing some tests. He had an MRI of the lower part of his back and an EMG. The MRI showed that there was no compression of the nerves. The EMG showed the nerves were not getting the messages across. Doctors then decided to test him for thyroid problems and diabetes. Also and Indiscopy to check for ulcers. The day he was schduled for the these tests we were able to make the first. His Indiscopy was scheduled for later in the afternoon. I bought him home to rest before the Indiscopy. When it came time to leave, he couldn’t get up. His legs had totally give out. I got his walker and spent 20 minutes getting him up enough to get him to the Van. He refused to let me call 911. I headed to the Hospital. I could not see him struggle anymore. And I was not going to stop till I found out what was wrong. The first week I fought Doctors, drove the nurses crazy, and talked to anyone and everyone about what had happend. At the same time I watched Billy’ condition worsen. His face began to draw and his other arm was being effected also. One evening I was outside the hospital talking to a young man from the ER about Billy.
He mentioned GBS. I called my daughter and had her look it up in the internet. The site she went to led her to Barre’s Esophigus.(sp) That helped us understand the Indiscopy results and what they were looking for there. They did find ulcers but no cancerous lining. While all of this was going on I was also trying to get ahold of all of my customers to cancel their lawn upkeep for the week and let them know what was going on. One of my customers who is in the medical field told me to ask about GBS. She said that it sounded as though Billy had those same symtoms. I then went to the nurses station and ask them if they could tell me what they knew about this. They pulled it up on the computer, printed it out and there, in black and white, were all of Billys symtoms. I called my daughter and she pulled up several different sites about this and printed it out. So when the Doctors came in the next day I hit them with what I had found. The neuroligist tried to argue with me, telling me that GBS had no pain. Knowing well that he was wrong, I pushed for him to order a spinal tap. Two days later they began the first treatment for GBS. Since then Billys condition has worsened. By the 5th treatment, his respiratory system was being effected. They now have him in ICU. The Pulmonary Doctor is watching him for a collapsed lung and signs of possible pneumonia. Now it is just a waiting game. The Doctors drug their feet and let it get this far. So, now that I have asked all of the questions to get where we are at today, what do I need to know now. And this is why I am asking for help to walk us through this. I need to somewhat know what to expect. And I need to know how to help Billy understand that he has a long road ahead of him and all of the support he needs to see him through this. God Bless all of you! Piper
AnonymousJuly 28, 2006 at 8:20 pm
Welcome to your new family, where we feel what you feel. Please give others time to respond to your post. My name is Liz, I can’t give you the right kind of information on GBS because I have another kind of syndrome called CIDP and I cannot fully relate to GBS. We have read many posts from members about the “PAIN” they suffer. It’s real! One of the first medications recommended is NEURONTIN (spelling might be wrong). Your husband should be on this. Has your husband had a spinal tap/lumbar puncture. This can confirm most of the time. IVIG’s are the treatments that are most commonly used for GBS/CIDP. These should be started. And though the sooner the better, IT IS NEVER TOO LATE.
Wait for other’s to respond.
AnonymousJuly 28, 2006 at 9:11 pm
hi piper & welcome,
there are only 2 treatments for gbs ivig & plasmapheresis [pp]. each has a 70% chance of working on any one individual. which ever one he is being given is not working. the other should be tried. pp is a little invasive & the docs have to rule on his ability to accept. where do you live? take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJuly 29, 2006 at 10:55 am
I gather from the spinal tap that Billy’s had elevated protien? Gene said that sometimes either the plasmapharesis or IVIG doesnt work. Often, the docs will try IVIG first because, as Gene said, Plasmapharesis is more invasive. Having said that, and maybe Gene can just confirm or correct me 😀 (sorry gene, not being sarcastic, you do know far more than I do), they often dont want to do Plasmapharesis just after doing IVIG because it flushes out the IVIG and any possible good it is doing. Having said that, and I commend you for being such a good advocate for your hubby, I really feel its up to you to push for whichever one hasnt been tried if you feel that the other hasnt helped at all. I’m sure you know that time is of the essence to prevent further nerve damage. Please keep us posted.
As for pain …… for MANY pain is the worst thing by far about suffering from GBS
AnonymousJuly 29, 2006 at 11:02 am
Welcome to “the family”. I am so sorry that you needed to find us. Yes, yes, yes, GBS can be extremely painful ~ and only the patient knows how bad it is. Listen to your husband and insist that all the medical people do too. You are now his advocate!! It will be hard and frustrating at times but you can do it. Learn all you can about GBS. And keep returning here with questions. We are the folks with the experience:eek: and each of us have our own unique presentations of symptoms. Never stop telling your husband how much you love him and support him. There are many of us here who survived because of the love of our primary caregiver!! God Bless the caregivers:)
AnonymousJuly 29, 2006 at 5:27 pm
As I also welcome you to our little corner of the world I can only emphaise what my sisters and brothers have said that, always ask questions, do not take no or “I’ll get back to you” as any type of an answer. Yes there is pain and it will come and go over time and any Dr who says other wise is a d@#* quack!
I may be a small town, West Texas country boy but this site and these good folks have helped me understand and manage my GBS as much as any Dr has. Listen and please feel free to ask any questions.
AnonymousJuly 29, 2006 at 7:37 pm
[QUOTE=piper]. And this is why I am asking for help to walk us through this. I need to somewhat know what to expect. And I need to know how to help Billy understand that he has a long road ahead of him and all of the support he needs to see him through this. God Bless all of you! Piper[/QUOTE]
First of all I would be asking questions about CIDP. GBS “usually” moves quickly, CIDP moves at a slower pace. Secondly, I would watch what kind of care he receives from the hospital staff. More problems arise when patients are not taken care of properly, ie…pneumonia, staph infections, and bed sores. Most of these are preventable. Any questions you have WRITE DOWN and don’t let the doctor leave until you have asked all of them and understand the answers. If you have to, make a copy of the questions and hand them to him and make it known you would like answers. (My husband did this with my neurologist and it worked miracles)
Unfortunately you are in a waiting period. You will take a step forward and a few steps back but this is the nature of ANY recovery. You will need to start off taking this one hour at a time, then one day at a time, etc….It can be a long road but it can and will get easier as time goes by. Keep your husband informed of what is going on. People tend to forget that even though the body is ‘broke’, there is nothing wrong with the mind and the biggest fear of all is the unknown.
You have found the BEST place for information, support, and best of all a place to vent because we have all “been there and done that” and understand more than anyone else will.
AnonymousJuly 29, 2006 at 8:46 pm
I don’t know how to thank you , our new family, for the quick response. So far it seems as though I am doing everything the way you have advised. I have even gone as far as to document everything from day one. Yes I have questions and that is what the Doctors and Nurses are not liking. One thing that Billy had requested, way before all of this went down, was close communication between Doctors and ourselves. This I will not let him down on. Yes, nuerotin was prescribed. Yes he has gone through the Ivig treatment. His last treatment was July 17th, when he was taken to ICU. Now they are talking about the plasmapherisis. Billy has also developed pulmonary complications. A collapsed lung that is being watched daily by way of x-rays and blood gases. Calling and having Doctors paged to answer questions has been a number one priority on my list. Documentation of all that has gone on and the type of care Billy is receiving has been the number two priority on the list. I want answers and I want to know about any procedures that are being done. His Neurologist says that going with the plasmapherisis, the decision, would depend on the pulmonary doctor. Then proceeded to explain that it was an artform not a scientific form. This, from the same Doctor who told me there was no pain from GBS. All of this I had found out yesterday when I had gathered bits and pieces from one of the nurses in the ER and decided it was time for a gathering of the minds. I explained to these Doctors that the lines of communication would have no gaps and that I wanted to be informed of each step that was being taken. That is when the pulmonary doctor explained every question I had for him. As for the hospital staff, they haven’t mistreated Billy physically but there have been occassions where the nurse supervisor has been called in. This due to lack of pharmaciutical supplies and personal hygene supplies to care for Billy. Also a break in the skin on his back side which I requested a copy of the picture and have yet to receive. As for Billy knowing and understanding what is happening, the nurses told us the first day not to stimulate him by telling him that we love him, nor should we let him know what was going on because they said he would forget anyway. (Not remember). We found that this was wrong. Billy seems to respond better when he knows what is going on and that he has the love and support from his family seems to help keep him more at ease. Today we even went as far as to tape a voice recording of his two most favorite little shadows, his 2 and 3 year old grand daughters, and played it for him. He even tried to tell our daughter that he loved her. He also, for one brief second, noticed the date on the nurses message board and I had to explain to him how long he had been in ICU and why he was back there to begin with. Today, for Billy, this was a good day. As I read through your responses, I realized that so far I have handled things the right way. This has always been in the back of my mind. Have I done the right things the right way? And have I done all I can do to get the right answers? Knowing that I have the support and understanding of people who have been through this will help get us through. I know there are going to be many more questions that will need answers in the days to come. I know that we have a long road ahead of us but as long as we have support from family and friends, such as all of you, with gods help we will get there. God Bless All Of You………….Piper
AnonymousJuly 30, 2006 at 4:56 pm
Hi, Piper! I’m sorry you had to find us, but now that you have, I hope we can be a real help and encouragement to you. You’re being a wonderful caregiver. Isn’t it funny how the medical profession, who would have us believe that they know everything, miss the mark so often and tell us things that are untrue? I’m glad you found help for Billy as soon as you did, even though you really had to fight for it! Keep up the good work, and be sure you tell him how much you love him and are pulling for him. I wouldn’t have made it if my sweet husband hadn’t been there right by my side, encouraging me and helping me through it all. He scratched my nose, combed my hair, brushed my teeth, fed me, and other “unmentionable” things. God bless the caregivers, and God bless you, Piper. You’ll get through this, and you will be closer to your husband than ever!
AnonymousJuly 30, 2006 at 7:45 pm
I’ll introduce myself briefly, I am a primary care giver for my wife whose first GBS symptoms introduced themselves on March 12, 2006…(we are doing very well now). Anyway it sounds to me like you are doing everything right on. I want to let you know also that Drs. can be fired. We (our primary care physician, my wife, and I) fired our first neurologist for non-communication….best move we ever made. If you have a Dr on your team you trust you might talk to him/her about it. GBS is very painful and it sounds to me like your neurologist may not be a team player.
AnonymousJuly 30, 2006 at 10:06 pm
I wish that Billy could see the outpour of support we are getting from all of you. Anyways, as I told you last, I would be asking questions in the days ahead. So, here we go:
#1. Do any of you have any Idea if there is a GBS rep or counselor in the Fort Walton Beach or Pensacola, Florida area? If so, I need to know how to get ahold of them, or how to find out where to go to find one. I am having trouble explaining to his family that there is no quick fix for this syndrome and the problems that can result from it. And believe me, if there was a quick fix, I would be the first one to insist on getting it. I know they are concerned but I have explained this until I am blue in the face and I am not getting it across to them.
Also, I did not know that we could fire this neurologist. That is something to keep in mind. There is another Doctor that Billy and I both felt comfortable with and that was the Doctor that did the EMG. He was more down to earth and was able to explain his findings to us without all of the medical mumbo jumbo. As Billy would say, “Speak English!” Billy’s pulmonary Doctor knows that I am very concerned and that I will get answers, whatever it takes to do so. And it has been made very clear that there will be no quick moves until he makes the decision to do so and that means that he feels that Billy can hold his oxygen levels on his own, and that his lungs are well enough to handle a trip to be moved. The hospital where Billy is at now is not set up to handle plasmapherisis so he will have to be moved to Big Baptist in Pensacola. Right now Billy is being given Lasix. The respiratory nurse was suctioning alot of foamy fluid from his lungs today. Also, they have noticed that when they move him from one side to another, his oxygen levels go down. He has a small perferation in his right lung and when they move him to the left there is too much pressure on the good lung. So everything depends on when the pulmonary doctor clears the way for Billy to be moved. Anyways, as I said before, a meeting with a rep or counselor would help so very much. And I hope you know how much all of you have helped already. Not only have you made me feel like Billy and I are not alone in this but you have given me a place to go when I just need a little encouragement. God Bless All Of You…………..Piper
AnonymousJuly 30, 2006 at 11:30 pm
the docs work for you cuz you pay them. you are in charge not them. if the doc who did the emg has handled gbs cases before or from other gbsers…
FL Mayo Clinic in Jacksonville.
dr stephen block 1411 No Flagler Dr, W Palm beach
University of Miami, School of Medicine, Department of Neurology. Dr. Bradley[He’s the Chief Neurologist, teaches medical students, writes medical text and periodicals, and is heavy into ALS research] , if not then on of his associates Dr. Mauricio Concha with Neurological Associates in Sarasota. he is moving [locally?]… later by another, I was on a heart monitor and close to a respirator. I have nothing but wonderful things to say about Dr. Concha!! Last I heard, he was in Sarasota, FL
Manley Kilgore – Baptist Hospital in Jacksonivlle 904-396-2400. Rehab doc Howard Weiss 904-296-9939. He is also a resident at Brooks Rehab Hospital. They treat every GBS patient in Jax and he is also very willing to help.
If Tallahassee is not too far of a trip for you might want to get in touch with the Tallahassee Neurological Clinic at (850)878-8121. They have done wonders with me
take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJuly 31, 2006 at 11:52 pm
Thankyou Gene for the info. I went to the Hospital today and called for another consult. The neurologist did a flip flop on us. His words were as follows: I woke up this morning and thought about how the plasmapherisis needs to be done. I could not in my right mind go on vacation (tipical Doctors story) till the 13th of august and leave Billy in the lurch. So, I want to transfer him to Pensacola Wednesday, and begin the treatment.
I backtracked to last Friday and the story he gave me about the pulmonary Doctor and how he would not move Billy unless he thought it was right. Then I proceeded to ask him questions such as, If they start this treatment, how would it effect the treatment that has already been done. He said that my questions were good ones. He doesn’t know where I am getting all of this at.
My daughter said, let them go ahead and transfer him and get the treatment started. Monitor how this Dr. Frank handles things then if it is not to your satisfaction, request one of the Doctors on the list to come in and take over.
Anyways, I have ammo. So again thankyou for coming through.
Billys day was a good one. He was alert most of the day and let me know he is ready to fight back. I told him that his only job was to rest and let the medicine do the work. I figured they have turned down the sedative to wake him up alittle. This evening when they put a new bottle of the Sedative on the IV machine he tried to tell them no more. He realized today that alot of time had gone by and he doesn’t remember where it went. The Lasix worked in getting the water off. Today was the first time I had seen his hands look normal. His respiratory vitals stayed stable today, even when they turned him. The Pulmonary Doctor said if the treatment will help him get off of the ventilator then we need to go ahead. But as of this evening the two Doctors had not consulted with one another.
I just know that getting him into a better hospital is going to be a relief. Not just for myself but for him.
I was reading some of the “Things I wish They Knew” earlier. All of the things they talked about is exactly what Billy has been through. The shame, the embarrassment, the helplessness, and the trapped feeling. And when one of us, the nurses, the Doctors, and PT would touch him he would scream from the pain. Today they tried to talk me into shaving his beard. They shaved his mustache because of the tape that is holding eveything in place. They didn’t like the idea that they had to wipe the drool out his beard. I told them if they touched it I would clean house. It is the one thing that he is very attached to and so am I. It is part of his identity. This thing has taken away his pride and dignity, now they want to take this from him all because they don’t want to clean him up. UGGHHHHHHHHHHHH!!!!!!!!!!!!!!!!! Anyways, I just wanted to thankyou again for the Info. God Bless All Of You Who Are Working To Help Us And Others Like Us. You Give Us Hope And Strength……………………..Piper
AnonymousAugust 1, 2006 at 7:57 am
neurontin for pain. many of us take neurontin, a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorbtion max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousAugust 1, 2006 at 6:20 pm
You are a very strong person! It sounds like you are doing all the right things. I’m sorry you have had a constant battle with the medical staff in the hospital. Some people forget that knowledge is power. Billy should know as much information as possible. He will decide for himself what information is most important for him. Family support and love is the most important thing you can do for Billy right now.
It is also very important to take care of yourself. Give yourself time to relax, get plenty of sleep, make sure you are eating healthy, etc. And please don’t feel guilty about taking time for yourself. Billy will understand.
I wish you, Billy and your family the best! Please keep us informed.
AnonymousAugust 2, 2006 at 5:12 am
Good Morning Everyone!
Had to get on here before the big move takes place today. They are planning on life flighting Billy to Pensacola Baptist to get his treatment of Plasmapherisis.
First of all, the mention of neurotin. This has been mentioned many times. Especially before Billy had his back surgery. He used it then. Since, he has graduated to Mepherdine. This is how bad he was hurting. After 2 months of this is when his doctor tried to talk him into Bufferix. After entering the hospital they began giving him Neurotin again. Not even time for it to set in before the pain management Doctor sent in a so called pain management specialist who prescribed Methodone. Billy was on the Moriphine Drip at the time and he explained the differences between the Meth and the Moriphine. He explained that the neurotin would take too long where the Meth would get into his system quicker. To me the neurotin would have been safer but to get Billys pain level down we both agreed. We figured with the way this guy talked, he knew what he was talking about. Since we have found several people who have asked him to help them with pain meds and he degrades them by making them think that it is all in their heads and that they need psyciatric help.
Anyways, People ask me if I have cried yet. They don’t know how much I have cried. Having to see someone you love suffer and not know if they are going to live or die is one of the hardest things to go through. Especially when no one is making a move to help and you are looking for answers. At the same time you are thinking of what could be wrong, on the back burner of your brain, you are planning a funeral. So many emotions come into play that you feel like you are on a merry go round or roller coaster and you can’t get off. And the hardest thing to do is hide the tears.
People ask me if I have gone to church. I am not a church goer. God and I have many conversations. The night before the diagnosis I went to the Chapel in the Hospital and prayed that God would help us find the way. After the diagnosis, I went back to the Chapel and got down on my hands and knees and thanked God that we finally had an answer and that we knew what we were fighting. Since, I have been to the Chapel many times and just asked God to give me strength to help Billy through this.
My Daughter and Son In Law make sure that I eat and rest. Food doesn’t impress me but I know that I need to eat so I do. I go to bed but I don’t sleep. My mind travels all night long and I awake before the Alarm. I haven’t been to sleep this past evening because I was at the hospital waiting for results from a ct-scan on Billys lungs. There is more damage then the x-rays were showing. I have to be at the Hospital early this morning to sign anything that needs signed in order to transfer him and get him admitted to the other Hospital.
My Daughter even went as far as to call the Hospital and ask that the nurses keep an eye on me. I know she is worried.
People ask me if I work. I work for myself, and I even tried to do that one day last week. I got the job done because it is right next door here at home. But I couldn’t concentrate because I worried about how Billy was being cared for and the phone kept ringing, Billys family, asking me the same questions that I had answered each day before that. Which caused me to spend more time on the job then I wanted to.
In between all of this I try to keep things up here at home.
I honestly think that once we get Billy moved I will be able to get back on track. This hospital puts patients first and makes sure all of their needs are met. I know this from when Billy had his back surgery. So maybe tonight we will all rest alittle easier.
Well It is time to get everything together and get ready to go.
Keep us in your prayers and I will keep you all posted.
God Bless All Of You…………………………Piper
AnonymousAugust 2, 2006 at 8:11 pm
” His Neurologist says that going with the plasmapherisis, the decision, would depend on the pulmonary doctor. Then proceeded to explain that it was an artform not a scientific form.”
If it helps at all, when my fiance and I went to visit his old nurses in the CCU a few months ago and starting asked questions about how close Ben came to not making it, they said without a doubt that he wouldn’t have survived without the plasmapheresis. He was started on it within seven hours of being admitted to the hospital. After that treatment ended, they tried to give him IVIG, but IVIG made his infection worse so they discontinued it after the first day. By the way, Ben had a very severe case of GBS, was ventilated for three weeks and had a bad case of pneumonia. After a year and five months, he’s doing great!
Hang in there and keep on top of those doctors!
AnonymousAugust 2, 2006 at 8:32 pm
I just read your most recent post from today, and your story sounds so similar to my own.
Ben has degenerative disc disease, a herniated disc and a bulging disc in three-and-a-half discs in his back. He was on Vicodin and then switched to Methodone when the Vicodin stopped working. He’s had steroid injections, epidurals and nerve burnings to no avail and finally had a morphine pump placed in his abdomen at the end of 2003. He has to get Morphine refills every three months, but he no longer feels the pain from his back. Since there’s one good disc between all the bad ones, and since he’s only in his 30s, he isn’t a candidate for back surgery.
When he came down with GBS 17 months ago, it almost tore me to pieces. I hurt so much emotionally seeing how much he was hurting physically. Like you, I had no interest or desire in eating and took multivitamins to give myself energy to go to work, visit him in the hospital and take care of all the responsibilities at home–his and my own. After all this time, I still have trouble eating when I’m not with him.
I’m proud of you for hanging in there the way you have. Just keep telling yourself to stay strong. You’ll have plenty of time to break down when everything is said and done!
AnonymousAugust 3, 2006 at 12:26 pm
Hi everyone. I am Piper’s daughter. I want to thank all of you for being there for my Mom in a different way that I can. She and Dad know that I am there for them in any way that I can be. However, I cannot be there for them in certain ways because I have never gone through this or known anyone who has up until now.
I did go see him last night and he looked very good. With the hospital that he is in now, my 13 year old, Adrianna, can go back to see him. He really perked up when she came back there. I didn’t tell him that she was coming but I did say that there was someone coming back to see him.
When Adri came back i kept trying to get him to open his eyes to see her. He finally opened them a little, saw who it was and his eyes got really big as if to say I’m glad to see you and he perked up a bit. At that same time his breaths per minute improved. He has been averaging 12 per minute but after seeing that Adri was there, his breaths per minute went up to 16 so I told him he was doing great and that if he kept trying off and on that he would eventually get off of that ventilator. As soon as I said that, it went up to 19 and I told him that that was good but not to push it too much and that he needs to try to do that off and on but not overdo it. Then he relaxed and it went down to 13-14. I believe that he is fighting and being able to see at least one of his grandchildren is giving him the means to fight a little bit more.
I wanted to tell you all thank you for being there. I think this forum is great and right now Mom and Dad need all of the support that they can get. Take care.
AnonymousAugust 6, 2006 at 12:36 am
This is the question I asked myself all day yesterday.
Hello Family! This is the first time I have had a chance to let you know what is going on with Billy.
Life- flight got him to the other Hospital with no problem.
The nurses there, went right to work getting him cleaned up and had me wait until they did. They got him stablized and let him rest for the rest of the day while they rewrote alot of things on his chart. Medications and such and making sure he was comfortable. The rest of the day was spent just making sure he was comfortable and informed.
Day two I met his nurse who is a young man that has been very well educated in GBS. Billy is his fifth patient. He is very informative and on top of everything concerning Billy. He even told me about a book that was a part of his class when they were studying and learning about GBS, ( The Patient In Number 10 ) I am looking for that book. He explains everything from procedures to medications that are given to Billy and why. I also met with the Neuropherisis Doctor who had consulted with Billys Neurologist and let me know that Billy did not need to wait one more day for his treatment of Plasmapherisis. The treatment began that afternoon and I got to watch some of the procedure. Billys nurse stayed right with us and noticed that PVC’s were coming up on the monitor. So he immediatedly did a blood draw to be tested for electrolytes in case they needed to give Billy an IV of Potassium and Magnesium. He explained to me his concerns and how it could even damage the heart. Billy having a weak side to his heart gave even more reason for concern. Anyways his test turned out alright, and he excepted the treatment well. I stayed overnight to make sure he was alright. His stats did go down once after they turned him but they came back up. They were having trouble with his lungs again and thought there might be a mucous plug. His nurse said that they would just have to be a little more diligent in the suctioning. Eventually it would clear.
Day three, was a very emotional day for me. Billy was having trouble moving his head and being alert at any one time. Also there was some concern that there might be blood clots shooting into his lungs from his legs, so they did an ultrasound. Later, I explained to his nurse my concerns of Billy being over medicated. Then his nurse explained to me how far this “Monster” had to go before reversing. And how at this point they wanted him to be as pain free as possible. I was numb. His Neurologist had never explained, what I call the Romeo Symptom. If you have read Shakespears story of Romeo and Juliet then you remember the death scene. All I could picture was Billy, crying for help and trying to get someone to hear him, and not even be able to talk with his eyes. I wanted to scream, throw something, beg God to please give me some kind of strength to reach in and take this Monster out of Billy. I held it all in. I went to the Chapel, they were busy. Then I did the only thing I could think of, I stood at Billys bedside and prayed.
Of course by the end of the day I was totaled. When our daughter and grandchildren came to visit I had to explain to them what to expect and my emotions toppled over. I just could not hold back anymore. I broke completely down. Our daughter, God Bless her heart, tried to comfort me. Then she went in to visit her daddy and tried not to cry. She then decided to take a few personal matters into her own hands. She alerted the nurses as to some of the upsets concerning Billys family and one of his sons. Then she told me that I was to focus on Billy and stay on top of these Doctors. She would handle all phone calls from here on in and if the family had any questions they could contact her. And today she proceeded to let his family know that this was how it needed to be.
Day four, Billy has been off his sedative since 1:00 a.m. this morning. The test to see if there is any change has shown there hasn’t been. Billy’s vent tube has been in for 13 days. The Ears, Nose, and Throat Doctor has explained the dangers of this. And has explained why and how a triech needs to be done on a day that he is not going through treatment. Which will be in the morning at 8:00 a.m. And although it sounds cruel, I explained to Billy what needed to be done. I keep nothing from him and I would rather him hear it from me.
I have also brought to the nurses attention the fact that his Neurologist went on vacation without letting any of the other Doctors know that I want communication. So I, with the nurses help, have called for a consultation with everyone involved in Billys care.
Today, I am calmer. Maybe crying and breaking down is what you need to do to help make you stronger for the life you are fighting for. Your focus does need to stay on that one person.
So when I ask myself, What Doesn’t This “Monster” Do? I also ask myself what it does do?
Not only does it destroy, it terrifies you, puts you on an emotional rollercoaster, educates you, tests your strength, your love for life, your faith in God and the one you love.
We all grew up with the teachings that attacking any one or anything from behind was the cowards way. But with this, how do you attack something head on that holds the fate and the face of the one you truly love and care about? You can only attack it from behind and hold onto your faith.
For now………………..God Bless All Of You………………Piper
AnonymousAugust 6, 2006 at 7:04 am
[B]There is one thing as time goes by you will truly be tested on, that is your love for your spouse. As my wife was disabled by GBS in 2000 & everything else that has developed after it. A lot of people have told me I don’t see how you can undertake a responsibility, of taking care of someone that was left totally disabled. We have been married for almost 29 yrs, do you think that could have any thing to do with it. Just keep your faith & take every thing one day at a time, because you don’t know what tomorrow is going to bring with it.[/B]
AnonymousAugust 6, 2006 at 12:10 pm
I cant tell you how happy I am that Billy has now been moved now. The nursing staff now at least seem to be on top of things. There are so many things I could say to you, but writing them down seems somehow hollow. Just want you to know that you are constantly in my thoughts and prayers.
AnonymousAugust 9, 2006 at 8:20 am
Hai .piper sorry i have not seen the thread all these days.first of all i would like to tell u that the pain which we get before the treatment is so serious that i would ask the god not to be faced even to my enemies..secondly if the treatment is not done till today i would suggest to take ur husband to other doc if possible………..demand every thing with the doctors as they are paid for that………………..and let them feel the feelings what we have……god bless ur family and pray for ur husband for the speedy recovery.
AnonymousAugust 9, 2006 at 8:25 am
Hai .piper sorry i have not seen the thread all these days.first of all i would like to tell u that the pain which we get before the treatment is so serious that i would ask the god not to be faced even to my enemies..secondly if the treatment is not done till today i would suggest to take ur husband to other doc if possible………..demand every thing with the doctors as they are paid for that………………..and let them feel the feelings what we have……god bless ur family and pray for ur husband for the speedy recovery.
AnonymousAugust 10, 2006 at 1:17 am
Hello Family! It’s been a very hectic and horrifying week.
Day four, Billy received his second treatment. He was a little coherent but more confused then anything else. I consulted with a Doctor from Respiratory about the vent tube and the dangers of being on it longer then 14 days. The Muscles in the throat would begin to break down and cause complications with the treatments he was receiving. The Doctor also explained the complications of treichs and blood thinners. The agreement would be to have a treich done but do it on a day that would not interfere with the treatment. Surgery was scheduled for 8 a.m. the next morning.
Day five, Billy was still trying to sort things out but it was making him more confused. Not remembering and not knowing was terrifying him. I told him just to relax and that I would help him sort things out in a few days. Billy received his treich. He came through the surgery well but there was alot of irritation in the throat that needs to be watched. Explaining to Billy that the vent in his mouth was gone and that there was something in his neck was not coming across very well that day because of the pain medicine and anesthetic. He did try to talk but the nurse said she couldn’t read lips. He looked so much more comfortable without all of that tubing sticking out of his mouth. The rest of the day was just letting him rest but keeping him informed. Of course once again meds had to be rewritten and changed. The Doctor on call came to visit. He tried to rediagnose Billy. Saying that this was not GBS and started spouting off that GBS doesn’t last longer then 6 weeks. Also that it was my job to find out if the nerves had been damaged from the inside or the out. Also that I needed to go back to the EMG to find the answers and that the fact that the Doctor who did the EMG Should not have explained it to us in Lamens Terms about the results. I came unglued and Billys Sister nearly did. I called him on everything he was saying. To the point that when I got done saying what I had to say he asked me where I got my information about GBS, (Thank you all ), and that in order for him to know what I knew he would have to go online and do research. Finally, I did tell him that I wanted his imput about this and that I would take into consideration what he was saying. He left admitting to the fact that he had only known Billy for 5 minutes, which would have taken him that long to even get his hands on Billys Medical Chart, and that if this was GBS it was the worst he had ever seen and he has seen 2 cases. Billys nurse said that he had no business trying to do what he did when the diagnosis has already been confirmed.
Day six, Billy had a good day. All positive signs. Trying to tell me he was ready to go home, kissing my finger, smiling, and shrugging his shoulders to nodding his head. All Positive. Although, towards the end of the day, bowel problems were in the midst. I cherish this day because it was good for Billy.
Day seven, I walked in to find Billy scared to death. Laying in a cold sweat and not knowing the respriatory nurse and what she was about to do. I explained to her that she had to tell him because he only remembers that day that day. Not day to day. While she is standing there trying to explain herself I am trying to suction Billys throat because he is bringing up everything from mucous to food from the feeding tube. I had to ask her if she thought she could stop talking long enough to help me cause he was choking. And I was panicing which didn’t help. His nurse and I finally got it under control and got him calmed down. His nurse was concerned about the food coming back through his throat. The Bowel was becoming desended. The food had acted like plaster filling. This called for xrays to confirm what was going on. At the same time I was informed that Billy had contacted MRSA. This is traveling through the hospital and now Billy is infected. The respiratory nurse returned later to change the treich collar. This caused the bleeding to begin and Billy was covered in Blood and once again scared to death. His nurse packed him and called the Doctor in for emergency service. The Doctor was able to pack it with a powder that helped the clotting. Then the Bowel Problem caused Stats to raise and Billys stomach to swell. This looked like the scene from Aliens. The Gastrologist said there wasn’t anything they could really do. Billys nurse had a different Idea. Since the xray confirmed what he thought there was only one solution. He to the suction tube, fitted it to the feeding tube and began suctioning the waste from Billys Bowel. It worked enough to bring his Stats down and Billy was able to rest. Talk of an indiscopy being done on day eight and all of this days events caused me to stay over night and make sure he was going to be alright. He pretty much rested through the night and the night nurse wanted an explanation from me because he was doing good when she left him the morning before.
Day eight, today. Because of the MRSA, Billy was moved to a private room and isolated. Because of this and the Bowel Problem the treatments have been put on hold and the cathiter that was in place for the treatments was removed. The indiscopy was an on again off again subject today. The main concern was nicking the bowel and causing it to rip. Also since Billys stomach had been particially removed in 1988 because of ulcers and rerouted caused concern because now the stomach was smaller and even placing a drainage tube would be a risk. The suctioning continued and his nurse took the time to do massage therapy causing decompression to continue. Along with a mineral oil enema and a tap water enema it all began to break loose by the end of the day. The indiscopy was put on hold till a later date. All meds and tube feeding would have to be rewritten in order for Billy to get the meds and nutrition that he needs. Trying to get Billy to rest at all today was a chore. He is afraid if he goes to sleep he won’t remember what has been going on around him. We have noticed that Billy may be at his plateau. Although, I cannot hold my breath. We can only hope. I just have to keep reminding him that all of the things going on around him are the little things that have to be fixed in order to help him get well. Some day he will understand, but thank God, in most cases, he won’t remember.
He noticed his wedding band on my chain today. He was upset about that. I explained to him that they had to take it off because his hands were so swollen that it was begining to cut the skin. Anyway, I asked him to marry me. By Mouthing, He asked me if I would marry him again. I said yes. Then I asked him if he would marry me again. He shook his head and mouthed the word yes. So, not only will we redo our vows but a wedding will take place when Billy says he is ready.
Now, Dear Family, it is time for me to get some rest. I wanted to keep you posted and let you know how Billy is doing. We thankyou for all you have done and are doing for us. Keep us in your prayers as we keep you all in ours. GOD BLESS ALL OF YOU……………………….Piper
P.S. My daughter had a talk with God and Billys brother Sammy. She asked them to watch over him and if the Romeo Symptom does happen, for Sammy to hold his hand on the other side until it was over.
AnonymousAugust 12, 2006 at 10:32 pm
Hello Dear Family! Have some time this evening to update you.
Day Nine, Billy received another cathiter in the groin and given another treatment. He was so tired he didn’t even know what was going on around him. His nurse also put a call into the gastro doc to find out why the indiscopoy wasn’t done. Later we found out that he only wanted to use the camera to place a larger tube for the suctioning of the bowel. He decided that the flex tube was doing just as well and changed his mind. The indiscopy will be done on a different date once Billy is more stable.
Day ten, Billy had another good day. He was a more coherent and tried to communicate more with everyone. He even watched some TV. That of course was in between naps. The MRSA is still being watched. It was finally explained to me just how dangerous this staff infection is. I wondered what will happen with Billy’s immune system being so low. All precautions are being taken but because of the extent of it being in the hosp. there are some things lacking.
Day eleven. Billy received another treatment today. This time alittle more painful for him. Plus the fact that they didn’t wake him up fully before starting. He knew what was happening but they surprized him with it. Today was also the first time his sister and brother inlaw saw what he had to go through. His sister was in tears. He tried to consoul her by blowing her a kiss. He was in tears because it was so painful. I left him this evening, resting. I just spoke with his nurse and she said that he asked for something for pain and went back to sleep. Hopefully tomarrow will be a better day for him.
Now for the questions.
1. Does anyone have any info on MRSA and how it might affect the GBS ?
2. Also could MRSA,being a staff infection, possibly settle in the body and cause the GBS to pop up again later?
3. Also can the anitbiotic used for MRSA be a danger to the new Plasma?
Well Dear Family, once again I must go. It’s time to settle down for the evening. Thankyou for all your responses, suggestions, info, and support and prayers. GOD BLESS YOU ALL………………..PIPER
AnonymousAugust 12, 2006 at 10:46 pm
piper, thnks for keeping us updated on Billy’s condition. I have him and your whole family in my thoughts and prayers. give you man a big hug for me. it sounds like he is really having a time of things. i hope he recovers fast from mrsa, it is a problem in a few hospitals. it will take time but he should recover from it just fine. take care of yourself piper.:)
AnonymousAugust 13, 2006 at 10:48 pm
I cry whenever I read a new post from you because Billy’s GBS story mirrors Ben’s so much. When Ben was in the hospital 17 months ago, he had a WBC count of 222,000 and had allergic reactions to the antibiotics used to fight the infection (Cefepime and Vancomycin). I never did find out for sure if Ben actually had an MRSA, but his neurologist said he thought so. Ben was in the fight for his life for three weeks while his body fought the attack on itself, and nobody could tell me if he would pull through or not. It was the most horrific time of both of our lives. When he finally started showing improvement, he had had a lot of time to think about the future of our relationship and proposed to me the same way Billy re-proposed to you. We’re hoping to get married in Vegas after the Symposium in Phoenix this November.
I’m really sorry you have to go through this right now. Please continue to keep us posted on your husband’s condition. He’s very lucky to have you and Jinnifer at his side.
AnonymousAugust 19, 2006 at 6:23 pm
Now for the questions.
1. Does anyone have any info on MRSA and how it might affect the GBS ?
[COLOR=”Red”]MRSA doesn’t affect GBS directly. However, since your immune system is out of sorts it has a chance to affect other systems of the body. Usually it causes problems with the respiratory system, especially with vented patients.[/COLOR]
2. Also could MRSA,being a staff infection, possibly settle in the body and cause the GBS to pop up again later?[COLOR=”red”]”Individuals can become carriers of MRSA in the same way that they can become a carrier of ordinary Staphylococcus aureus which is by physical contact with the organism.” This doesn’t necessarily mean that he will get MRSA again or even another type of staph infection. It isn’t shown that this could cause GBS to happen again (a sencond case is 3-5%) Remember though that no one knows exactly what causes GBS to happen in the first place.[/COLOR]
3. Also can the anitbiotic used for MRSA be a danger to the new Plasma?
[COLOR=”Red”]NO, my husband ask this same question to my doctor when I had it. No treatments were held because of the MRSA status.[/COLOR]
AnonymousAugust 29, 2006 at 12:46 am
Hello Family!!!! Dear Dear Family!!!!!!!
I am sorry I haven’t been able to get back with you. These past weeks have been something else. I am seeing prayers being answered each and every day.
I proceeded to ask the questions that I was concerned about before and I got the answers. There would be no interference with the treatment and such.
August 14th Billy received his last treatment. It didn’t seem to bother him. His neurologist decided to watch him for 2 weeks to see if there was any substantual change before proceeding with any further treatments. He explained that sometimes they have to do a booster.
We talked about pain medication and I bought up the neurontin. He thought that was a good idea. He agreed to the neurotin but then forgot to right the order. Billy’s nurse had a hey day with that one. She got on his case pronto about it. He also admitted to the nurse that he was not the one who diagnosed Billy. He told her that I was armed and prepared the day he walked into Billy’s room to find me standing there with all of the symptoms on paper. He admitted that I had done my research and was not stopping till I got answers.
Anyways, the rest of the week Billy seemed to be taking the treatment well. And just as he was getting settled down the Doctors decided to take the feeding tube out of his nose and place it in his stomach. This made for a couple of weary days for Billy. The change over of nurses didn’t help ither and at the time I didn’t understand why but would get the answers later.
August 21, Billy started moving his arms, and each day has added one more movement. He is now receiving P.T. and O.T. He has a top notch P.T. person who let Billy know that there is a reason this happend and that only God knows why. It could be one of two things. Billy was saving a life or he was chosen to further the education and research of this Syndrome. Billy’s whole mood changed after this Guy got finished. He ordered the boots for Billy to wear, adjusted them for him, showed me how I could work with his feet to help strengthen the muscles and to help with the leg lifts as long as Billy agreed. He then went one step forward. He asked Billy if he had ever meditated. I told him about Billys special place that we call the “NO WAKE ZONE!” This is where Billy goes when he just stares off into space. His P.T. told him that it was good he had a place like that to go. A place where none of this was going on and Billy was enjoying hisself, fishing, painting pictures, or just walking through a field of flowers.
The nurses have even watched Billy from the desk. They said he practices all the time. His P.T. says he has never seen this progress the way it is with Billy. Where normally each movement takes 3 days to accomplish, Billy is progressing in 24 hour periods.
During the course of last week, even though there were prayers being answered there was something that was causing Billy to be upset. I got down to the bottom of it. He was having problems with the night nurses not giving him medication that was listed on the chart. Having trouble with his Bowel was a main concern. Then I find out that a night time enema had been prescribed and when he asked for it it wasn’t done. I hit the roof and demanded to speak to the nurse supervisor. I ended up with every nurse in that unit hearing what I had to say and that I wanted answers as to why Billy was not receiving his medication that had clearly been listed on his chart. Then he had been left on a bedpan for 2 hours later that afternoon. The nurses were busy so I tried to recruit his respiratory nurse to help me get him off only to get the response of “I don’t turn patients!” and “I only work from the waist up!” Then the hidden evidence of a bath not being given topped it all. This all happend in a period of 2 days.
Just a few days before I had met the Vice President of Hospital Administrations on the elevator. He asked if we were being taken care of and all of our needs were being met. At that time, I said yes. He told me if I had any problems to come see him. Well that I did. I explained everything that had been going on and all of the things I had been finding out. He sent the Head of House to talk to me. She got an earfull. Everything from the Suction tube being placed back into Billys mouth after being placed in between contaminated linens to the not getting a bath. I explained to her that Gulf Breeze Hospital had been a nightmare for us and that I was so relieved to have him in Pensacola, because I knew he would be cared for and neither one of us had to worry. Then these events started and here we go again. She was horrified by the time I got finished. She promised me that there would be no more of these events take place, that I was only to worry about Billy getting well and that Billy was to only worry about getting well. There would be repercussions and repremands. Billy would not suffer from any of this. I was told that if I even had a preminition of something being wrong I was to report it to her. She did take matters in hand. She changed Billys nurses, had his room cleaned from top to bottom, supplied plenty of suctioning tubes to be changed out after each use, and place him back on a daily bath schedule instead of nightime. The respiratory nurse also got an attitude adjustment. Billy has rested well for the past three nights.
August 28, the Doctor has said no more treatments. Let’s watch him progress slowly. Billy was excited at this but could not remember the big word. That concerned him. I told him that plazmapherisis was a hard word to remember sometimes. Then he asked me what it was. I explained the procedure to him and made him understand that I would not have known about it either if I had not had the information from all of you and the All About Guillian-Barre site. Anyways, he has had a good day and went to sleep with somewhat a rested mind this evening.
A Special Note: In the midst of all of this we met a couple who introduced Baptist Hospital of Pensacola its first bout with Guillian-Barre.
In 1998 Charlie and Connie Roache were on a cruise when Charlie began getting sick. They ended up at Baptist and Charlie spent 19 months recooping because of 2 bouts with this monster. Charlie is now 88 years old and going strong. Connie was an RN at the time, so she knew what to look for although at the time she knew nothing about this monster that had attacked her husband. While speaking with her, she told me all of my fears and concerns and assured Billy and I both that everything would be alright. Charlie was a sight to behold. I explained to him that although I had Our New Family on the Internet, and the Pastor in south Fl., it was nice to meet a face with this thing. And I also explained to him that I didn’t mean that in a mean way. Connie checked Billy out and spoke to him with encouraging words that made Billy fall in love with her. They were going on vacation and they want to connect with us when they get back. They are a very special couple.
Today I spoke to Billy about Our New Family. I let him know how all of you welcomed us with open arms and have been walking with us every step of the way. I explained to him how you have kept me informed so I would know how to keep these Doctors on their toes. I also told him about your prayers and encouragement. I know from his smile, that he was thankful for all of you. And so am I. Till later Dear Family………GOD BLESS YOU ALL!
P.S. For those of you who haven’t read “Bed Number Ten”, you need to read this book. My daughter and son in law bought it for me. I am half way through it. It is a book that many of the nursing instructors are insisting that their students read. If you read it you will understand why.
AnonymousSeptember 6, 2006 at 11:39 pm
Hello Again Dear Family!
September 5th: Since I updated you last, there have been some changes. This past week has been busy with trying to wean Billy off the ventilator. There was very little success in this. His stats keep going down. But, he is doing well on the C-pap setting. Billy did not realize just how sick his lungs have been until 2 days ago. Now he understands why this weaning process is going to take time. We keep telling him that baby steps make big steps.
Doctor D is working carefully to find the right dosage of neurotin for Billys pain level, which has increased especially now that the nerves are begining to wake up. Many different sensations are coming back and the muscles are wanting to work. Doctor D has explained to Billy that his nerves have been clipped in sections like that of an electrical cord and that now they are being mended like wrapping electrical tape around that cord. Billy understood this.
P. T. and O. T. is coming along. Billy’s arms, hands, and fingers are moving more each day. His legs and feet are going to take a little more time. Doctor D explained that since his feet and legs were the first to get the bunt of this monster, it will take longer for them to recoop. But, just to give it time. Billy especially gets frustrated at this because the boots limit his mobility to try and move them hisself. So in the course of the day, if he feels like it, I remove the boots and work with him so he can practice a little bit.
Billy has also been taken out of MINU, Medical Intensive Nursing Unit, and placed in PCU, Progressive Care Unit. This is a step down from Intensive Care, eliminating the heart monitor and restricted visitation.
Billy doesn’t care for it much because it is in a corner where he hears noises but can’t see anything that is going on. He also feels like he is being ignored because the nurses do not respond as quickly as they did in MINU. This causes him to loose sleep at night. And when he does sleep during the day he has nightmares. He says they don’t make any since.
And even though this is a step towards recovery some of the nurses are as bad as the ones he had before. I have never seen nurses so hell bent and bound not wanting to give a patient a bath.
And one got to deal with me today when she overdosed Billy with pain medication, to the point he couldn’t even stay awake to do his P.T. and did not remember doing his O. T.. Then I couldn’t wake him up at all. Even smacking him on the sides of the face didn’t work. Finally I told him I was going home and that got his attention. I explained to him that he needed to stay awake because the nurse had given him to much medication. Then I went to the nurses station and confronted her in front of god and everybody and told her to get help because she was going to give him a bath to keep him moving and awake. Needless to say the job got done and Billy stayed awake through it and I stood there and watched to make sure it was done right. Then I spent the rest of the day practicing his movements and talking to him to give him a chance to work some of this off. He was somewhat alert when I left this evening.
I just spoke with his nurse. She said that she has been in his room and they have talked about how much medication, at one time, he should be given. He is resting now so that is a good thing. And he senses her when she comes into the room to check on him. So that is also a good thing. Today, he responded to no one coming into the room.
Emotions: Anger is a mild word for how I feel about what has happend. First this Monster that attacks from out of no where and then to have the medical profession to let you down in so many ways.
We have all mostly grown up with Doctors and Nurses who actually cared about people who are suffering from illnesses. Especially those who are left helpless to the point that they can’t even communicate. Those Doctors and Nurses are a rare find now adays.
Sadness comes when someone you love and care about so much is suffering and there is nothing you can do to help. And the times when you look at them and you see the inner child come out.
A sign of HOPE? You bet! With the first finger movement I knew that Billy was coming back. I had it in my mind that I would not see him leave the hospital in a body bag. Especially at the time when I did not know what we were dealing with. And I even told God that he had a fight on his hands.
This family has a motto, “We are Gurrs and we never give up. We fight Back!”
When I saw that finger movement I knew Billy had not given up. That he was fighting back. And still is, even though there is frustration of things not moving at the pace he wants it to.
Yes, there is a lot of emotion with any type of illness. It’s just that I can share my feelings and emotions with you all and you understand because you have all been there. That has been the one thing that has kept me going is actually knowing that someone understands.
Well family, it is time for me to get some rest. Tomarrow is a new day and it comes very early.
Thankyou for caring and keeping us in your prayers.
GOD BLESS YOU ALL! …………….Piper
AnonymousSeptember 7, 2006 at 8:35 am
A friend of mine has been in hospital for about 4 weeks now with GBS, my god, I can’t believe a guy who was in great shape is now paralized from the neck down, his wife is there by his side at all times. For anyone out there please please let me know what it is I can do to help them out, I’m still in shock and he seems to be getting worse, now on a machine to help him breath, can’t speak probably because of all the tubes down his throat and apparently his vision is dimished as well. How long does this down side last? His wife is putting up a good front, but I’m sure she is ready to fall apart, they have 2 small children and lots of friends but nobody is really sure what to do to help them.:(
AnonymousSeptember 7, 2006 at 9:07 am
hi trs & welcome,
most important – is he getting ivig or plasmapheresis [pp]? if not, he is associated w the wrong docs. no one knows how long nor to what degree a gbser will recover, but the recovery rate is high. he will have major fatigue for a long time & must rest or it will slo his recovery. find out if he is in pain. for that he needs neurontin. keep us informed on this thread. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousSeptember 7, 2006 at 10:21 am
It comforts my heart to hear that Billy is improving and I truly understand his frustration (and yours). I also feel angry when I hear stories of medical neglect. Rest assured you are doing the right thing(s) and know that even though we can only help in supporting you that Billy and you will continue to be in my prayers daily.
Thanks for the update and keep in touch
AnonymousSeptember 7, 2006 at 10:44 am
No offence now. Speaking from experiance ’cause I’ve been there done that. You’ve raked the nurses over the coals with what you discovered and observed as far as the care issues go, and let me guess, the administrator said to you “What is said here, stays here”, or something like that. That’s the first load of junk. I’d lay odds the nursing staff knows all about that talk you had with them, and you probably told them yourself trying to use that as power to get stuff done. People can get even more resistent, so becareful on your approach and methods. Now, please, don’t take this wrong, but I have to be blunt, to get your attention. First, you are doing nothing wrong, with your intent. Only natural. Are you an expert in GBS recovery? Are you well informed on what types of residuals are left over to deal with? Are you a doctor or nurse? A knowledgable therapist on how and what a GBSer really needs with therapy? Do you really know just how a male thinks? What they won’t tell you? Have you had a very simalar trauma in your life to know the physcological effects that impact a male? I ask this because I read posts above reading you dispencing medical care in your way, slapping upside the head, telling nurses he can’t sleep, must stay awake, do a bath, dispence therapy, and for the big one, how do you know what you are doing for him is benificial, and you aren’t the one causing problems? I hope I have your attention by now. Example one. I fell dead asleep in the middle of kissing my wife once. Out for hours, and when I woke up, I thought 5 minutes had passed. Fatigue is, and will be, the longest battle he will fight. Period. Drugs do provide deep sleep, and that’s just what he needs at times. Therapy comes in, does a little work, and that does exhaust him to the point that he should’nt be touched for at least a day. Then you come in, add your therapy, and all those areas will be even more exhausted. Now, the next therapy is even harder on him, because everybody is taking needed recovery time away from him, thinking they are doing good. Just getting him to sit upright in a wheelchair, for half an hour, can exhaust him considerably, let alone being drug off to a bath. This all snowballs and does effect every area and every single aspect of his recovery. Like getting off the vent, to name one. My internal brain getting excited when people showed up exhausted my phisically. He just might not have enough strength built up to recover from anything right now, because he isn’t getting it. Don’t think for a minute, that left alone over 2 shifts, even comes close to filling his energy tank back up. His stats keep going down, are your words. Bet they start right where everybody wants them though, then start to immediatly drop off and deminish. Welcome to GBS fatigue. All the fine people and experts would know this around him, so I assume you are aware? Exactly how his phisical condition works, and will be working for quite some time. It’s only been like that for me, for 7 years now. Why I had to reduce all phisical activity, just do low impact rangeing for no more then an hour, 3 days a week, to have enough strength to get off that darn vent. Then we started to add a bit more a little bit at a time. With GBS recovery, speed is an enemy and will be for a long time. Agin, you are not wrong, or what you are doing could be just fine, but who’s the judge of that? The patient is the last, or the person never to ask this of. Why? Because if just a smidge like me, you’ll do, or say anything, at all points along the way, to get the heck out of there, and out of this trauma. Especially males. Gotta be tough you know. Just like society says we must. Doctors, nurses, therapists really aren’t sure what to do or try, so they go with what they know. You, as a participant, are indeed a part of the whole, which includes you in the problems and troubles, or setbacks, too. Along with the good. Obviously, your commitment is outstanding, along with desire and want. A patient in traumas like these needs people such as yourself. I had one in my wife. There are no pat answers or solutions, which is frustrating to us all. My wife’s job was to try and keep any outside interference, like nursing healthcare, to not add to the problems at hand. Just let go of all other stuff on the phisical energy draining stuff. Having been on the vent for almost 5 months, agin, I’ve been there, done that with all the nursing problems and neglect, from every shift. Believe me, you don’t know the half of it, because the patients fear is kept in side not wanting to appear weak, and us males will only let out a bit at a time. Knowledge is good, and a tool to work with and get understanding from, to better the situation. What is done now, may not be wrong at all, and often times isn’t, but the timing could be. All this stuff won’t be found in litterature. A learn on the fly, and why as much insite as a person can get, is benificial.
AnonymousSeptember 7, 2006 at 11:05 am
Thanks for your message Gene, I really do appreciate it, I will be visiting my friend this weekend, he is in ICU so limited to visitors, I’m not sure what kind of medication he is getting but will find out when I visit and will keep you posted, I will also let his wife know about this site as I’m sure it would be a great help to her to read about others and find out more information as well.
AnonymousSeptember 7, 2006 at 11:17 am
Saw your note and sympathize. I was in great shape as a 31 year old marathon runner, weight lifter, nationally competitive swimmer in college, father of 1 year old toddler, and married to a doctor who specializes on sports medicine. All of this to say that I believe I have a good idea of what your friend is going through. I was about as active as can be, before the GBS hit me about 8 weeks ago. I was lucky in that the GBS stopped before a ventilator was required, but perhaps I can offer a few thoughts on what I would have liked, had I the opportunity to have friends around more (my wife was on vacation when GBS hit, and I was alone).
(1) Communicate with your friend. He may not be able to speak to you with his voice, eyes, etc … but he can with his heart. The greatest thing a patient believes in when so scared is spirituality, family, and friends. Talk to him.
(2) If he is like I was, the change from an active lifestyle (if I didn’t run 5 miles before work in the morning, I felt lazy) to a medical facility is a destructive shock on the mental system. The lack of “seratonin” (I believe that is the enzyme) from exercise and activity leads to depression, a feeling of guilt, and a feeling of worthlessness. Talk to your friend about his athletic feats, being in-shape, and reassure him that this is only temporary. GBS is debilitating, but there is hope and expectation of recovery. Talk about all the different types of training he will be able to do in time. Once the hips come back, there are recumbent bikes that strap onto your legs … once arms come back, you can lift dumbells in bed. PT has different stretch cords that can be used to exercise anything from fingers to neck. (I went through this when I broke my neck 6 years ago).
(3) If communication is a problem, do your best to help ensure that he gets as much PT AVAILABILITY as possible (he may or may not want it, but the availability to do PT if desired may be extremely important to him). More than anything, I wanted / needed an advocate to get the PT folks into my room to help move my limbs around.
(4) I absolutely hated the fact that I needed help and was going to have to rely on others for a lot of things. Once my wife returned, she had to do most of the work in watching the baby, housework, etc., and neighbors mowed the lawn. My first priority while in the hospital bed was trying to find ways to help my wife manage without me. If you can, offer to assist / support the wife, even if just babysitting for a few hours on a Sunday evening so the wife can rest.
(5) Without being able to talk, and probably unwilling to ask folks for much (if he is a stubborn as I was), look for things in the hospital that you would like if you were stuck in the bed. for example, I had this horrible “airplane” pillow, but I was too stubborn to ask anyone to bring a pillow from home, or to read to me, or to put music on the radio during the day, etc.
(6) Read the post by Racer above … I think he has a good idea of the mental attitude / male stubborness that went through me. I wasn’t about to show anybody I was weak, or cause any trouble … I was going to be “tough” through everything.
(6) Give him a hug.
Just a few thoughts from my own, very biased, experience. Just the fact that you were concerned enough to find this forum speaks a great deal about your concern.
Oh, one final thing. While in the hospital, I had very, very little information about GBS, its effects, long-term effects, treatments and how they work, and personal experiences (i.e. stuff learned on this forum). Any information you can provide to your friend will be greatly appreciated. I sure wish I had the booklet that this forum puts out while I was in the hospital.
AnonymousSeptember 7, 2006 at 11:45 am
Thank you so much for your input, my friend is much like you very active 34 yrs old and you can tell by looking at his eyes that he is very frustrated, he and his wife have many friends and everyone wants to help only not sure what to do, so the idea’s that you have given will help as I will print this off and pass on the fellow friends, financially it’s going to be a problem for them, but we are having a fund raiser to help out and hoping to raise enough for his wife to stay with him to help, on my next visit i will remember everything you have said on reassuring him. Like you he is one that does not like to rely on other to help, very proud person, but at times like this you need to let your friends help when and where ever they can. I will print off as much info on this GBS as I can get and pass on to his wife I’m sure the hospital has given her info, but more can’t hurt.
Thanks again friend, and a big hug to you:o
AnonymousSeptember 8, 2006 at 11:48 pm
First of all no offense taken. But you do need to re read my posts about Billys care.
First of all, the administrator never said those words and I never let on that I did speak to them.
Also, I am sure that they do know. Especially since the head of nursing rectified the situation.
Secondly, unless you have seen what I have seen, in which I can only discribe to you, you have no idea what the meaning of the word neglect is.
Thirdly, you stated that I slapped Billy upside the head. These are your words, not mine.
As for being an expert, having a medical profession, or any type of therapist, I am none of these. And I don’t profess to be. I have had and researched alot of info on GBS. I read, ask questions, and demand answers. I observe situations and try to find solutions to problems.
Yes, I am aware of the fact that this monster takes alot out of a person and that it takes an enormous amount of time to try and recoop a minutes worth the energy. This is why I have expressed my concerns to the Doctor and the nurses about his being pushed to fast to far. In turn, the Doctor has reassured me that they are not making any moves to allow this monster to make a second visit. And he explained what kind of events would have to take place in order for this to happen.
Fourth, I also know about the impact it has on, not only males, but also females. I understand your comments about this whole heartedly. I know what this has done to my husband and how it makes him feel less a man, much less a human being at this point, and it has affected his pride. Much the same way it has affected yours.
And I do know that there have been times he has said things just to get these people to leave him alone. I know my husbands weakness’ and strengths. And I am well aware that he is being tested to the max on this.
Fifth, When my husband has the fear of god look on his face because he is being ignored when a response is needed or cries because he hasn’t had a bath in two days and wasn’t turned to ease the pain, not only coming from his hip but also a bed sore the size of a fifty cent piece on his back, which just didn’t appear over the last 24 hours, and two more on each butt cheek, or has to listen to the comments such as, “This guy hasn’t missed any meals.”, which was made today during therapy, or when a nurse stands and tells me that, “When he calls us, we know that he is on a vent and we will get there to suction him in due time, but anything else he may need will have to wait until we can get to it.”, and the majority of the time it is well forgotten, which I have observed that also. So, when I see these things, on top of knowing, and have witnesses to back me up on this, that he has been over medicated to the point of no response, then I have all of the reason to be concerned and need to take care of the situations.
And Finally, I am so very sorry you have been put in the hands of this monster and have had to bare the agony in which you speak. I know that this has been a hard journey for you and I know that Billys has just begun. I know that it is not going to be easy, but I will do all that is nesscessary and within my power to make sure that he gets the proper care along the way.
Thankyou, so much for your imput. It is appreciated.
GOD BLESS YOU……………….Piper
AnonymousSeptember 9, 2006 at 1:45 am
I was afraid you might precieve things a bit off the mark. I apoligize for not picking my words more carefully. I though my words, been there, done that, would tip you off. The law says, anything that’s taken to an administrator, via complaint, is supposed to be handled very privately. Just the people who need to take it downhill for you, without anyone knowing who is complaining, should be involved. As happened to me many times, the whole darn staff, on every shift, knew who the complainer was by day 2. When no supervisiors work the 2nd and 3rd shifts, what kind of care do you think I got? That’s just what Billy experianced. More neglect for that. They broke the law. I have not seen what you have seen. You are right. I only lived it. Ten months straight in 4 different facilities, one being 5 months in a resthome. Have you seen resthomes lately? Where the bottom tier is for nurses to get work when the hospitals won’t touch them? Foriegn speaking CNA’s? Have you had a nurse stand over you filling a seringe while paralized and can’t talk, while she grousses about having to do 3 days in jail over a weekend? Wait 2 days for a bath?? How neglected. I thought getting a bath was only done once every 6 weeks like they did to me. Sorry. No bathaid agin. The law says, in resthomes, they are only required to bath any patient once a week. Period. Providing their’s a bath aid. The average call light responce in there, was 1 1/2 hours on 2nd and 3rd shifts, and on the main shift, it was 45 minutes. Try that sucking on flem while vented. Had every nurse on every shift refuse to let me use my alpha board to communicate with them. Did 3 days once with huge pain caused by a bladder infection, along with everything else before the blood in my urine finally tipped one off. Just to name a few of the good stuff. No monster hit me piper. A disease did. It was only hard on me phisically, and just tested me mentally. I’ve been where Billy is right now, but Billy hasn’t gone where I’ve been in the whole picture yet. No book, doctor or observation will tell you where he’ll be 6 months from now, but I know, they guess. A year from now too. Two years from now. The healthcare side did more long term damage to me then the disease did, so to speak. Therapy was a player in this. Trying the wrong stuff at the wrong time looking for results. After over 9000 hours of hospital time, over 3500 hours of therapies of all kinds, after 3 doctors, and all machine tests, in the beginning of therapies, said I’d never walk agin in my life, while in the condition Billy is in right now, I took over, changed the timing of things being done, tried different approaches and methods, and 4 years later, I have walked unassisted ever since. Even without braces. Piper? In the big picture, when you are both able to look back, you will find that the most time a person spent with Billy in his recovery, will have been therapists. Over 80% of his time in this overall, will be with therapists. I got off to a bad start, and it took me 11 months with therapists to turn things around, but damage was already done. It didn’t cost me then. It costs me now and forever. In my haste to try to not let that happen to another, I blew it with you. Agin, I apoligize. You are doing exactly what you should be doing. Number one advocate, and as I’ve said, there are no right or wrongs in this biz. You have to do what you feel is right. I am not at ground zero. I certainly don’t see what you see now. But I just may, see what you don’t see, that can haunt you, and mostly Billy, later. Having been there, done that. My wife spotted my bedsores before any nurse did. I know the drill. I will not put any undo anything on any caregiver. I know the value. Here’s a small example. You mentioned turning him. Pain in hip. I still have trouble on one side of my hip 7 years later. Know why? Because of the ‘way’ they turned me. Slide one leg over, push down with knee bent, and on the side he goes. Just like the textbook says, and how they were trained to do it. Just didn’t work for me. With a weak hip already, it pulled the tendons, ground bone on bone, caused a great deal of pain, but by the time I got everybody on the same page months later, it was too late. Now I live with it. Please Piper, never say sorry to me, or that you are sorry for me. That insults me, but I probably deserve it, and that’s ok. It was a learning process only, that cost a very high price is all. Just trying to save people a little change is all. I meant no disrespect. Please believe that. I wish you good luck, and most of all, Billy too. It sure ain’t going to be easy, so pace yourself and pick your fights wisely. You ain’t seen nothing yet.
AnonymousSeptember 9, 2006 at 6:41 pm
I understand Suzanne. The first 2 years I came on here, my posts were all done with a mouthstick, and sip and puff device for the mouse functions. Which would make a post like that above, a 2 hour affair at best. I graduated to one finger ever since, and using that example of mine above, that’s about 50 minutes of work for me to just get that the way it is. Something has to go you know, and I chose spelling and layout, like paragraphing, because my thoughts travel much faster then my typing abilities. Sorry for the inconvience. I’ll keep that in mind and work on it.:)
AnonymousSeptember 10, 2006 at 12:13 am
That’s why I can say, been there, done that. Might explain all those hours of therapy too, and why I can speak to that subject on just about everything in it. The reallity is, my condition is, and always has been, irrellevent to me, and what people need on this forum. Which is to never have to travel the road I had to take, to get to where I am today. Had I known everything up front, myself and anybody would have a much smoother road. My story only serves me, and through those experiances I had, I can now hopefully serve others in a better way. My wife doesn’t even know the half of it, let alone here. Just doing my part for my caregiver and loved one, that had her hands too full for me to even think of pileing on more. Not too many of us have had the full meal deal GBS can offer, and I’ve always understood why I may confuse some, and most can’t relate to my methods and approaches. Many were just never exposed to them, because they are luckier then they may precieve.:)
AnonymousSeptember 12, 2006 at 9:17 am
It’s TRS here, just an update on my friend, he was moved to Critical Care, was on a ventilator this was removed on Thursday and then they put in a trek, he seems to be having a hard time breathing but I’m told he needs to fight to breath to help build up the thin muscles in between his rib cage, he does alot of twiching and again they say that’s a good sign and he is starting to recover, I was there on Sunday and was told that he’s not SICK enough anymore to be in Critical Care and that they were going to move him back to ICU, hoping that’s a good thing. It’s so very frustrating for all his friends as he can’t talk and he trys so hard to communicate with you about what he wants it’s more a guessing game, I was heart broken when I left on Sunday, he was trying so hard, he had tears coming down the sides of his face and I found it very hard not to cry with him, try’d to be positive about his recovery and I let him know about this forum and that there were alot of postivie feed back and that he is going to get better, just with time. All I could do was tell him to use his eyes and I would try to figure out what it was he wanted or needed, oh my god I wish I could read his mind to make things easier for him.:confused:
AnonymousSeptember 16, 2006 at 4:25 pm
[QUOTE=piper]”They didn’t like the idea that they had to wipe the drool out his beard. I told them if they touched it I would clean house. It is the one thing that he is very attached to and so am I. It is part of his identity. This thing has taken away his pride and dignity, now they want to take this from him all because they don’t want to clean him up. UGGHHHHHHHHHHHH!!!!!!!!!!!!!!!!!”[/QUOTE]
Anytime the doctors or staff try to treat “your most important person”, like “just another side of beef”; keep a [B]very large color picture[/B] in your mind of the thousands of bills you and insurance will get for the services they provide. They won’t be SO lazy when they want their payment! I would guess that 90% of my care was in maintainance from the nurses and physical therapists. Your husband needs care, but also needs to remain a person. Give ’em heck! :p
My thoughts and prayers are with you…
AnonymousSeptember 16, 2006 at 5:10 pm
Bob gets it. Used piper’s analogy very well too.
I found one very effective key to connecting with human beings. I just think one sentence in my head first “What does this human CARE about?” Not what’s right or wrong about.
No agenda right out of the gate, just knowledge an understanding. Sometimes people need to be told, an in our cases, as patients, someone, to tell everybody else. Not tell one person, everybody else, on every shift. Tough job, but can be done. Might not get all the consistency you want, but you might get more then others too.
After all, as Bob so well put, get what you are paying for, and sometimes, it takes asking. I was transfered once, over a 26 mile distance, and that bill to my insurance was $1400. Paid in full. Now, what would a limo cost me for that same trip? Yet, if one thing is out of line with that limo service, they will hear about it. We stay silent, until boil over, then might, say something. A minumum of a $1000 per day in these places, yet what would you expect, if the same service was done, and the building had your favorite hotel name on it? You’d tell them exactly what you expect of them, or expected of them, and why you’ll never be back.
I just wondered why nobody in the healthcare system asks that question anymore. One answer. You get what you pay for.
AnonymousNovember 17, 2006 at 12:01 am
Hello Dear Family!
I am sorry that I haven’t been able to keep in touch with you but, this past month and a half has been a ride for life.
Everything that could happen did. Even Coding!
Problem with the trech being the biggest problem of all.
Billy’s only airwave is the trech. The day the trech was removed Billy coded and I could do nothing to help him. Within an hour he turned Blue and was on his way out. Every nurse and respiratory person on the floor was in the room trying to bring him back. Even the respiratory team from Life Flight came in to help.
I was trying to pump air into his mouth with the abulatory bag and screaming all at the same time. Billy was looking to me for help and I couldn’t do anything. A tech took me by the arm and led me out of the room while the nurses worked frantically to bring him back. That was when they discoverd that without the trech he was not getting any oxygen.
There is a blockage somewhere above the treach and no one has been able to figure out what is going on as of yet. One ENT Doc has gone in twice and removed a couple of pollups but couldn’t seem to find the problem.
One Doc had an Idea as to what the problem might be but was booted out from day one.
You know the game I’m sure.
Alot of Racers advise and words of warning were taken when all of this came about.
At this point in the game I was well into working with the nurses instead of trying to find fault. I learned from them and they from me.
I worked closely with Doctors and the P.T. team to make sure Billy’s every need was met.
We all worked together and got Billy up to the point of being discharged from the Hosp.
That one we have his nuerolgy Doc to thank for. He fought for us all the way. During his venture he found that someone was playing games and didn’t like the hand that had been dealt to Billy. He put a stop to it and called in re inforcements. At the same time he realized that I had known all along there was a game being played. I had kept my mouth shut because I knew how dirty that game could get and I wasn’t going to see Billy go through anymore then he had.
Billy is now at West Florida Rehab, where he has just gone through his first week of real P.T.. and was evaluated as to how much longer the staff thought he might be there.
With just the progress that he has made this week we are looking at 5 to 7 more weeks before he comes home.
With Gods help this will come about.
During this time the new ENT DOC is going to go in and see if he can figure out what is going on so that way we have a heads up when the trech does come out.
Billy’s P.T. Doc wants to wait until he is stronger before any surgery is preformed. He says he has been through enough. We need to get him stronger and concentrate on movement.
Billy is improving everyday and we both are praying everyday.
Well I guess I had best log off for now. I just wanted to let you all know that your prayers for us are being answered everyday and please know that you all are in our prayers day and night.
God Bless You All!…………………………………….PIPER
You must be logged in to reply to this topic.