ssalin02

I am so sorry to hear of the complications your father is having.

How old is he and did he have any other heath problems before onset of GBS? Have you spoke with the Charge nurse? You can also go to the hospital administrator if the doctor is not returning your calls. Has he dealt with other with GBS? You can always ask for another opinion.

I will keep you in my prayers.

Wow, you all have really been through a hard time lately. Is your father still getting worse? If so, you can ask to have him get IVIG even though he’s already had plasmapheresis. If he didn’t respond well to the pp, then he might still have a shot with the IVIG.

Also, regarding the blood clot, is your father not already on blood thinners as a preventative measure? When I was put into the hospital for GBS, even before the paralysis set in I was put on blood thinners just to make sure no clots formed as I got more sedentary.

Your father also should have been wearing a heart monitor the moment he was dx with GBS, as GBS can affect not only the breathing muscles but the heart muscles as well. The whole autonomic nervous system is vulnerable to attack and confusion. Once again, I was suited up in a heart monitor the moment I got into the hospital, and I think this is standard practice if your doctor knows what s/he is doing.

This is the worst of it right now, seeing the deterioration happening and not knowing how bad it will get, and how quickly or how much he will improve once the worst is over. Please try to hang in there and be strong for your father, and don’t be afraid to push to get him what he needs. Your dad needs you and the rest of your family to be his advocates right now, and I applaud you for coming online and finding this forum, trying to get the information and support that you need to be there for your dad the best you can.

Best wishes to you and your father.

I Am Sorry To Hear About Your Dad Keep Supporting Him I Will Pray For You And Your Dad Roy

ss

One thing you father should be receiving is physical therapy, the therapist should be doing passive movements with his limbs as well as making sure he doesnt get ‘foot drop’.

Is your father still getting worse, or is he stable (besides the heart and blood clot and diabetes)? Im trying to understand what you mean by ‘getting worse’ when he was moved to another floor? It seems by reading your posts that he went off the respirator but is now back on after getting worse again after Plasmapharesis, am i correct in that? The heart and blood clot wouldnt mean he was getting worse, unfortunately it is just a complication of GBS.

I’m sure you are aware that in GBS, the body (myelin sheath and/or nerves) are attacked for up to 4 weeks, however, if the attack continues for longer ….. 4 – 8 weeks they give it the name of SIDP. But you have to [B]understand that in order for it to be SIDP, the symptoms will have to get WORSE between that 4 – 8 week period[/B], in which case another Plasmapharesis course or an IVIg couse can be done. It is very difficult to tell if phasmapharesis or IVIg hasnt helped because it isnt supposed to ‘make him better’, its just supposed to try and stop further attack and help in recovery further down the line. I know its hard to understand, and I am not the best at explaining things 😮 .

ss,

Yes, I have had GBS, everyone on the forum has either had it or is a care giver of someone who has had GBS or CIDP. There is so much information on the Forum so im glad you found it.

The fact that your father moved his leg is a realy good sign, this may well be the very start of a loooong, slow recovery. Remember that it is long and slow and doesnt return to almost normal overnight. Was your father put on the respirator after he had his cardiac arrest. It is possible to go into cardiac arrest with GBS, but not that common – I’m just trying to understand why the doctor said he was gasping for air, diagnosed him as having cardiac arrest, ant then put him on a respirator (if thats the way i understand it). It just sounds more like respiratory failure they way its been explained. But as people have said before, they should have been monitoring him, hooked up to monitors all the time.

There are about 2% of cases that end in death, however it is often from complications due to GBS. Unfortunately so many doctors have never seen GBS and that is why the forums are so great in finding out exactly what patients who have been affected have to say.

ssalin02 I am glad that you have found this forum and that your Dad is already showing signs of the GBS starting to reverse, with the movement of his leg. Sounds like the caregivers need a little support here too! This is a very varied illness and it has many variants, so everyone’s case is different but it sounds like you Dad is getting the care he needs. They are aware of the IVIG and the PlasmaPhresesis used for stopping the progression of the attack on the myelin sheath. Your Dad has progrogressed just about paralell to my case. I had the colapsed lung and my EKGs are not normal since I had the GBS. I had ventilators and traches fail. It is very scarey for the family and the patient. I can tell you that not being able to talk is very frustrating and on this site you can send for information for Caregivers, About the GBS and in the store what is available for the GBS patients. One thing I would suggest that if he is not able to speak to get the cards that will help you communicate. Be very possitive and keep humor as part of his very day. Print things out from this board and read them to him also. As GBS retreats it will be a very slow process and the last things to heal are usually the first things that were effected. Usually the numbness in the hands and feet. The nerves repair the sheath at a very slow pace and depending on his height he will take longer than I am to heal. I am on my 23 month of recovery and I able to do just about everything but slowly and I have to concentrate! I still get tired when I do too much. Continue to post and ask any question you can think of. We are here to support you and your family as much as you need. Also thru the foundation you can contact a Liason in your area if you think their visit would help your Father understand he will get better. I agree with the others rehab is very important but REST is also more important. Horizontial REST will help the nerves heal…..exercise will help the muscles gain strenght…but it is important that rehab finds the correct balance between the two or he could relapse and have a bad few days from over doing it and he must communicate with them and listen to his body! Tell him you don’t want to walk a mile showing off your new found independence because you have to walk back that same distance! If he has pain make sure that is addressed too! Was he put on a stomach tube? GBS=[B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly. Did he have his eyes effected? Also don’t panic if he does get pneumonia they will be watching for any signs of that since his hospital stay is longer. Stay well yourself too!

‘When does the doctor decide it will be okay for my dad to go home’ too many variables for me to answer.

‘once he is discharged is their additional help’ you can take him home, hire or not hire help or put him in post hosp rehab. i recommend the former. take care. be well.

gene gbs 8-99
in numbers there is strength

I was lucky I was transferred to a larger hospital that had the PP treatment that I needed and then after I was let go from ICU and all those steps I went to a floor in the same hospital that was not owned by the hospital that took care of people that had traches. There they gave me OT and PT to make sure I was able to do the important things like roll over, sit and stand. I had to be able to feed myself and wash my face because the feeding myself process was not pretty! Comb my hair and brush my teeth. There they weaned me off the trache but did not remove it or the feeding tube yet. They made sure all my systems started to come back and were functioning normally and that my swallowing continued to get stronger. It was very hard for me to chew my soft food without falling asleep in the middle of the meal. I would be exhausted. I made progress each day and finally got to be tested to see if I could take a few steps. They told me that 3 steps were required to go to the rehab floor. They got me doing that many and my hope through the holidays were up. Then they increased that goal to 10 steps to get transferred. I was so upset with them I could have walked or hi jacked a wheel chair right to the lobby and called myself a taxi! So they gave me a few more days and tested me again not in my room but gave me the whole hallway to prove I could walk those 10 steps! I was determined that day! They transferred me from the wheelchair to the walker/frame to stand and then said they would count! Scared? Nope! PETRIFIED! I remember hearing each step be counted off out loud. one..two..three..eight..nine..ten..you can keep going if you feel you want to…..twenty..twentyone..twentytwo..twentythree..twentyfour..I told them I was not going for a record and wanted to sit down to rest. I had done my tens steps under the watchful eye and support of my Dream Team and then every nurse, aid and staff member that was on that floor come to help me celebrate. I heard a few praise me and congratulate me and as I rested I tried not to break down with all the emotions I was feeling. I knew I would not be home for Christmas but I would be able to return home soon! I just had to get to the next level of rehab in the gym! I had no idea what that meant! I was ready for anything that day! After I rested I walked another 30 steps and the floor broke out in cheering and laughing and crying! I was ready to head for the elevators! Again, I was not ready to break any records but did not want to have them up the goal again for getting into the rehab floor. They were trying to determine if I should go into an other facility that was more of a convalasant home then rehab or another facility that was well known in the area for their long term rehab program. That next week I was moved to intense rehab in the same hospital. It was very hard, but now more than ever tasting my freedom and independance from that hospital I was READY! I had to be able to do 6 steps, get into a tub since I did not have a walk in shower. I had to be able to walk twice the distance of my house which was 80 feet. So I could walk to the bathroom and back to the bed or couch. They had to see what my abilities were so they knew what kind of equipment to send home with me to make my life easier. Slow process but they knew what they were doing! After I come home they arranged for a nurse to visit several times a week, Occupational Therapy to visit a couple of times a week to make sure I had not run into something I tried to do that they did not think about teaching me! Physcial Therapy to get me moving more and more. Teaching me other ways to do things until I was strong enough to do it correctly. Making sure I was able to use all the tools they sent me home with. Things to help put on my socks, pull up my clothes, get things from high places, low places and to make sure I was doing what they said I had for homework. They made me do the steps and even took me for a walk in the neighborhood to see a friend that had just had knee surgery! Oh I was so proud of myself! They continued visits until I was able to drive myself a short distance to the local rehab facility where they got serious and made me a gym rat! Again OT and PT and massage and visits to their complaint department to VENT! Once again they knew I was ready for the next level when I started to feel well enough to complain! 😮
This was a slow process and many have done it quicker. You do what you have to do as I say! Everyone is different but we all have the same goals in mind. I was working out in the pool and that is where I felt I had freedom that is hard to describe. I was returning to the same room where I had friends in the aqua aerobic classes I used to take. I was in the heated rehab pool but we all could laugh together as we all exercised. I felt “normal” was coming back! That whole Summer of 2006 was slow going and progress was there, just slower. Summer of 2007 has been the best so far! I still am trying to build up my strenght in my back, hips and upper legs. GBS has shown me how to have patience and enjoy another side of life that I had a tendancy to rush past before! Also, I now have a very large family here that I can enjoy sharing stories with! Tell your Dad to do his BEST and be honest, they can make sure they provide assistance and do the REST. Oh REST that is still the dominate factor in my life, but I have it down to only ten hours of sleep a day now! Stress to your Dad that he gets his REST! I think his progression has come along very well so far. It is frustrating, watch for depression and as his advocate ask many questions. He will find how lucky he is to have a girl friend that can help with just minor things that are necessary each day. They will work it out! People will realise they need more help now than ever. As a caregiver make sure you take care of yourself too! Be Well!