Billy Is Coming Back!!!!!!!

August 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.