Can Someone Please Help Walk Us Through This?

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

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

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

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

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

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.

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

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!
Piper
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.

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

Hey There!

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

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