I wish I was there to give you a big hug! Here is a cyber one ((((ROSE)))).

Please take care of yourself. I have to remind you that there is no rushing GBS and you have seen that with Frank. BE VERY PATIENT! I think we all can recall having small set backs and we learn that life is very fragile. I had a trache fail. I wanted things taken out and taken off all the time. I had a staff of Doctors and Nurses and Aids that I could not persuade to budge with things before it was time. Then I was frustrated…as time went on I was very grateful they did not give into my whims. It sounds like Frank is doing ok with his slow progress. We all wish it could be quicker. I had many set backs, some of them being my fault. I did not pace myself and mentally was exhausted or physically let myself get run down trying to show the staff how strong I was so I could get home before a certain holiday. That did not happen I spent them all in the hospital. I listened to what the staff had to say and thought….if I only could get home….well let me tell you when I got home it was very hard even with the help friends and family provided. GBS zapped me of all my strenght. Everything was an effort and I mean Every Thing even Thinking! Even with me being 7 month since my onset of GBS I have not got much strenght back. Everything is an effort even now. But I can do many things that 7 months ago I was not able to do! I have come a long way baby! Frank just needs his rest and let his body heal and get stronger. Depression, Frustration and Fatigue are constantly part of my life now and I fight them with Patience, Humor and REST!

Give Frank a hug from us!

My heart goes out to you and your family. As a patient I am sure I felt the same way as Frank did and I paniced. I am glad he is making progress to be moved to a different unit. It takes time to get to know the routine and everyone’s names and faces. I too got upset with changes but later started to enjoy them because I was moving each time to a place in my recovery to getting home. Remember that you will see little set backs. Some will be the fault of the staff, but most will be from the patient not getting enough rest and in an exhausted condition they panic. Tell Frank to continue to let the staff know what he is feeling and experiencing. Communications is not taken as complaining. Tell the Charge Nurse and if necessary go to the person higher than that. Each patient has a patient advocate that will also act in their behalf. Social workers and Case Workers are asigned to each patient also to make sure they are getting the proper care that their insurance covers. If at any time you feel that Frank needs extra care they can asign a nurse’s aide to watch over him at all times when family members are not available. DO NOT exhaust yourselves while he is in the hospital. You all will be needed when he comes out of the hospital and is at home.

When at home I had a visiting Nurse for a few weeks and also for about a month I had both Physical and Occupational Therapists coming to the house several times a week. That lasted till I could get myself to the rehab facility near my home.

As far as the bed sores since you are not able to lay in every position, for example on your stomach due to the trache, they will move you often. I had them move me every two hours and I still got bed sores due to the skin breaking down. I agree have the people from the Wound Care Department come take pictures and the Nurses should be changing the bandages each day.

Personally I see good in him having that bowel movement. That shows improvement and his systems are starting to return to normal functioning. There is no blockage in the bowel. Tell Frank about the possitive things that are happening. They are all signs in his GBS starting to reverse. You should start to see little things each day happening. As tiny as they may seem they lead to those daily things in our lives that we take for granted.

That is great news that Frank is making a little bit of progress each day! The fact that they are changing him over to the trache is great news. Yes he will be more comfortable. Seeing changes each day are a big deal and his attitude should be better as he does better. This is a scarey time and very frustrating time. Once he has his strenght back they will put on the valve to let him speak. Just speaking can take energy out of your body, so they will not rush it.

Hope you are getting plenty of rest also. Take care of yourself! Frank is very lucky to have you in his corner!

This is the time that with myself I was feeling hot and I just felt like I needed my curled up fingers to be held between family members hands to straighten them out. Also they were drying out and they would apply lotion to the. Also my feet were drying out and lotion felt good. I can not guarantee this is how Frank feels, so be sure to ask him. I also needed eye drops to keep my eyes moist. One day I got pain in my leg and I knew it was muscle cramp so I asked they to send a physical therapist in to stretch out my leg a few times. That really helped with the pain. Did more for the leg than taking the pain killers. Also ask if he would like a massage. Just on the surface not a deep massage. You have to be careful not to cause a blood clot. I was able to move my feet from the ankles down, so I was constantly moving them around. Remember everyone is different! Glad you are keeping us up to date with Frank’s progress!

Is Frank able to make any noise like a cluck or clicking with his tongue against the roof of his mouth? That is what I did to get attention. The staff understood once I got their attention the first time I realized I could do it!

It took me awhile to even be able to move my hand or fingers to use the “Soft Touch” call button. I could move my hand just a tiny bit toward my hip so that is where we stuck the “Soft Touch” call button. All I had to do was stiffen up my arm and pull it toward my body. Also is he able to move his feet? The button could be taped to his sheet, so he could lift his heel slightly and move it onto the call button. Orhe might be able to have it taped to the side of his one foot and move the other foot to hit into it. Or he might be able to pull his feet together. Or move his head to the side and squeeze the button between the pillow and his cheek. I had very creative Nurses and Aids I guess.

Franks floor or section should have a Charge Nurse who is in control of the complaint department. That might be the better person to ask to do something about all the errors that are occuring. I had many things I was not please with too but I did not report all of them. So make sure if you see some thing you do it for Frank. No reason to get him upset…he does not need that to take away his energy. You will find many frustrations thru all this.

Take care of yourself too!

I am sorry to hear your Brother is having difficulty and had to be put on the ventilator. I have to tell you that having you there as this happened made him feel loved and secure. He knows that you will all make sure he is taken care of. I lost track of time during this time. I don’t remember anything once I was on the ventilator and got plenty of rest. I felt no pain also. When I did become conscience, I felt better just from not havng that labored breathing and I knew that the GBS was starting to reverse. I understood I had hit bottom like they said I would and that I was coming back from a very scarey time of seeing my legs get weaker and weaker and my arms not wanting to repond. I seen the continual buzz of the ICU units and all the monitors from other rooms going off. Except for my double vision and not being able to close my eyes, not being able to speak was terrifying. So make sure he is getting his rest…lots of rest. You are not able to get much rest in the ICU….too busy! Be there for him and have those alphabet cards so you can correspont with him and be patient. Don’t be alarmed when they are not able to give you a stable condition in ICU. If he did not need that kind of care he would be moved to another unit. Remember all of us had different feelings with being touched and lotion put on our skin and receiving baths from strangers. Not to mention all the other things they have to do to keep us clean and able to be as comfortable as possible. They will start to move his positon so he does not get bed sores every couple of hours. It is very hard to get sleep while in the ICU or any unit of the hospitals. It is always daylight in them. Noise all day and night long. People always coming in to ask questions and check vitas or take blood. I got a chest xray every morning at 5:00 A.M.. Even if I had just got to sleep at 4:45 A.M.

As the days go on you will figure out what he needs to you do for him and we can give you suggestions. Right now just be there for him and pray in any way you wish. We all will only have good thoughts for you and your family right now. You all need to take care of yourselves too! There is no set time frame he will wake up or how long he will have to remain on the ventilator. I am sure other systems have shut down also now. Digestive system like bowel movements will not occur. His mouth and eyes will become very dry. Ask if they are spraying his mouth with a mist. Or if they are putting drops or squirting a cream into his eyes to keep them from drying out.

Once I come out of being medicated I remember being so HOT I could not stand even a sheet but did keep it on certain parts of my body to stay modest. It is hard to explain but they had my hospital window open and it was 16 degrees outdoors…I was sweating due to the nerves next to the spine that control body temp were being effected. I felt like the sheets weighted a ton and my skin was giving me all kinds of sensations like itching, pinching, numbness, from hour to hour…day to day it kept changing. Later when I was feeling better it went in the other direction and I was cold all the time. In either case I was not able to move the sheets to get uncovered or covered. But ask and set up a system where you rotate visits. Don’t everyone visit at once. Mentally just a constant conversation can be very exhausting for the GBS patient.

I am sure others will add to this thread from their experiences. Remember this is a very slow process! Rely on the Nurses to answer your questions, but get a very good relationship with the Doctor in what he is expecting or watching to happen next to get your Brother to the next level. It gives everyone something to look forward to.