My Dad my hero has GBS
AnonymousMay 30, 2006 at 7:02 pm
My dad was admitted into Critical Care 2 weeks ago today they determined it was GBS based on a spinal tap 2 days after admission. He was seeing double, then lost feeling in his legs and hands, could not open his eyes, and then lost the ability to breathe on his own. He has been on a respirator and a feeding tube for 11 days now and they are going to put a traceotomy (I know I spelled this wrong) on Thurs. He had 6 treatments of plasma exchanges and today is the 3rd day of the antibody treatment. He can move his leg, the nurses call him bam..bam. He can understand the questions we ask him when he is not sedated; however, he gets so frustrated when he is not sedated because he wants us to rub him constantly on his back. His respirator has come out 2 times and they coded him as he stopped breathing. My big papa is 380 lbs which doesn’t help this I hear so getting under him to rub him is a task. We have seen no improvement and some nurses and doctors are as about as informative as my 4 year old. They say it takes time and I have done so much research that it looks like this is the case, but this is the scariest thing I have ever been through. I just want my dad back – I know this is selfish and I need to have patience its just hard as this point. My mom is at the hospital everyday from 7 am to 10 at night when the nurses make her go home, and I am attempting to take care of my 88 year old grandfather that has alzeimer he lives with my parents, work a 60 hour a week job, and take care of my young children while no stop thinking about the best dad in the world. I think my dad has a severe case as I have read, I just need to have patience right?
May 30, 2006 at 7:29 pm
Welcome to our little community. Sorry you had to search us out but we will all be able to give you our different insights to GBS. You may have read that in addition to GBS standing for Guillain-Barre Syndrome we also refer to it Getting Better Slowly.
I was in the hospital for 3 ½ months and was in ICU for 1 month. From what you posted, it appears that your dad is being treated in a similar protocol to mine except I never had a tracheotomy or respirator. It is very frustrating for the family because there are no concrete answers that the medical professionals can give you. Each GBS victim is very different. I was sedated most of the time I was in ICU because I was in so much pain from the raw nerves. I am almost 5 years out and feel pretty good most of the time. I walk unassisted but my stamina is the pits.
I can only imagine how hard it is for you and your family right now with your dad in the hospital and your Alzheimer’s afflicted grandfather. My best advice is to ask for help. People by nature want to help and you just have to ask and I’m sure you’ll have a number of people ready to help. If you’re affiliated with a religious community, let them know if you need help. Keep coming here and doing your research and make sure your mom and you are loud advocates for your dad since he can’t speak for himself right now.
AnonymousMay 30, 2006 at 9:22 pm
Nancy & Jerimy:
Thank you for your words, it helps to hear from other survivors and supporters. I will keep you posted one day at time I keep telling myself. I was crying tonight and my 7 year old said to me what is crying going to do mommy you need to focus your energy on praying that is better than crying. With that wisdom I will continue to be the advocate for my Dad as Nancy said it best, and I will follow the advise of my very wise daughter. One day at a time. Thank you again for your words. Courtney
AnonymousMay 30, 2006 at 9:58 pm
welcome, welcome, welcome. you have become a member of a wonderful family and support group. try to be patient and keep a positive attitude your dad is still inside that big bear body of his. your daughter is very wise, keep praying and take a few minutes for you. there is nothing wrong with crying but don’t forget to pull yourself back up and remember things will improve with time. we are here if you need us.
AnonymousMay 30, 2006 at 10:15 pm
courtney, welcome to the family. you’re doing a great job with your dad and your daughter! please don’t spread yourself too thin, your dad seems to be doing ok for now. take time for your family and yourself. you will get through this tuff time one day at a time, there will be ups and downs just like a roller coaster ride, but in the end things will get back to a new normal for your dad. be patient, it is harder for your dad if you appear stressed due to his illness. keep up the positive attitude, it will help your dad the most! as for the scratching the back, be careful, the skin breaks down really easy, i’m still healing from my last paralysis event a few weeks ago, i loved having my back scratched too. make sure the nurses know he is uncomfortable, they have magic powder that will make him feel more comfy. take care and give your wise daughter a hug from me!:)
AnonymousMay 31, 2006 at 9:12 am
We are in Miami Florida in South Miami Hospital. Anyone that is in this area that can help us with telling us their story would be WONDERFUL. I am so happy I found this site it has helped me through this process.
South Miami Hospital
AnonymousMay 31, 2006 at 9:26 am
Courtney, You are such a hero, I feel so blessed to have you as my sister, Dad is going to be okay and we are going to take care of him for the rest of his life. I love you very much and appreciate everything you are doing, please take care of yourself and ask for help…I hate the fact that he hasn’t changed, when can we have him back? See you tomorrow stay strong wish I was there with you and mom and dad everyday I love you all…Erica 🙁 Thank you all for your advice for my dad it is greatly appreciated we all feel very blessed to have found this web-site.
AnonymousMay 31, 2006 at 5:31 pm
Welcome Courtney and Erica,
I am so sorry about your father. It sounds like he is getting the best treatment for GBS. It is important to stay postitve around your dad as he will need all the encouragement he can get. Steps of improvement may be very small but should be celebrated as a step towards recovery. You will be very scared and upset at the moment but remember that all of us posting on here have had GBS and have recovered well enough to post on these forums. I personally have returned to work, although not full time yet, after 2 years off. I can do everything for myself so keep this in mind. Everyone recovers at different rates and some people are left with some residual effects but others recover fully. Stay positive that your dad will make a good recovery and keep on praying for him.
Best wishes from Australia,
AnonymousMay 31, 2006 at 11:02 pm
Courtney & Erica –
Stay positive, ask your fathers doctors a lot of questions, and know that recovery will come – just have patience. They say GBS actually means Get Better Slowly.
My father was diagnosed with GBS this Feb. (paralyzed from the waist down, and now is walking unassisted!) and I found that the people on this forum know heaps more about the many facets of GBS than any doctor my father came across. Most only dealt with a few cases before, and each patient is different than the next.
Please ask all the questions you want here, and the advice you’ll get will be worth a million bucks!
Other than that – stay positive, and think of this as a set back. It’s scary, but things will get better before you know it!!
AnonymousJune 1, 2006 at 7:08 am
I work with Courtney and a fortunate to be one of the people here that she confides in. I have also known her father for about three years and he is one of the best people that you could ever meet. If you could ever say that someone does not deserve what has happened to him, this would be one of those times.
She forwarded this message thread to a few of us in the office. When I read your replies to her, I was touched by the outpouring of advice and support that all of you gave to someone that you never met. While we are supporting her, it is always best to talk with people that have been through the same situation, and you have provided that for her. I acutually walked into her office twice yesterday and found her reading this thread. She told me that it makes her feel better.
I just want to say thank you to all of you from those of us at here at her office.
AnonymousJune 1, 2006 at 8:20 am
Welcome to our part of the web! I jsut wanted to take a second and tell you…it will get better, slowly more than likely but better. REad the Forums and listen to the wealth of information offered. I am one my one year recovery and am walking, with a cane, and working full time and tarveling. He will get there.
AnonymousJune 1, 2006 at 7:05 pm
I just wanted to let everyone know that today they put my dad on a trach. There was a scare where the respiratory therepist did not put the trach cover on correctly and he did not get oxygen for 3 minutes, thank god my mom was there. She got the supervisor and had this respiratory therepist removed from my dad’s case as she was also the one that his ventilator tube came out during one of her treatments. He is completely sedated today and tomorrow they will assess him. The scare that happened today with him not having oxygen has me worried, but I hope tomorrow when we assess him he will be able to shake his head yes and no like he did before this procedure. I will keep you all posted. Thank you so much for the support and comments they are keeping me staying positive and strong. By the way my mother is a super human and she continues to keep being a positive and spiritual partner to her husband of 46 years – my dad.
June 1, 2006 at 9:41 pm
I’m so sorry to hear of the problems but so glad that your mom was there to be his noisy advocate. When I was in ICU, the hospital “requested” that my sister stay in there all day when I wasn’t sedated because I was not a very good patient and I would only do something when she told me to (yes, she’s older! 🙂 ). I know this time is hard as you don’t know the outcome. My sister kept a daily journal of what went on each day. Everything. Times of doctor visits. Name and time every nurse, therapist, aide, treatment, test, priest, janitor, visitor, whoever came into my room. What my personality was like at the time. How long I slept. What I ate. She said she started at first just to keep track of all of the activity straight but said later it became a good distraction for her. She didn’t give it to me until I had been out of the hospital for over a year. I was glad and shocked all at the same time to read the hell I’d been through. Just keep in mind that GBS doesn’t go away as fast as it shows up. Two weeks of decline leading to paralysis took over three years to feel I was almost 80% back to normal.
Peace of the Lord,
AnonymousJune 1, 2006 at 10:30 pm
Courtney, Erica and family, my mother has GBS ( since Oct. of 2004 ) she was severe, on respirator,paralyzed, feeding tube, etc. She is now at home and doing really well with the help of my dad and her loving five children. Dad has taken over her care since leaving a series of hospitals and nursing homes. She is now finnished with in home PT and OT , dad has taken over as her PT and OT. They are both in their 70’s and with lots of love and laughter have persevered.
Words of advise, always have some one there with your dad, visit everyday take turns if needed !! ASK QUESTIONS !!
take care and God bless,
AnonymousJune 1, 2006 at 11:30 pm
Hi and welcome to the group. I am so sorry to hear about your dad. My dad is in the hospital now with a possible stroke so I know things can be scary.
I can’t comment on the GBS as I have CIDP and will leave that to others, but just wanted to welcome you, and let you know your in good hands here.
I will pray for your dad .
AnonymousJune 2, 2006 at 2:52 pm
thank you all for helping courtney this site has been such a blessing for her. My dad is doing better today moving his legs and responding eventhough he is still sedated. Life is so hard right now my grandfather took a turn for the worse and hospice has given him 48 to 72 hours to live. My father is going to be so sad to learn he lost his dad through this whole thing. You all are so strong I hope we have the strength to get through this and help my mom, she is going to miss my grandfather so much. This is such a horrible thing to go through and I know you all keep saying slow recovery but I want my dad back now and have such a hard time being patience. Thanks for all your prayers and support. Erica
AnonymousJune 2, 2006 at 3:35 pm
Erica and Courtney,
I am so sorry to hear about your Grandfather, you are all going through some really tough times right now. It sounds like your Dad will need you more then ever if his father passes away. Keep coming back, we are here to support you and help however we can. My prayers are with you, your Dad, Grandfather and the rest of your family.
AnonymousJune 2, 2006 at 3:51 pm
I sit here and read your posts and wish so much that there was something I could do or say……My prayers and thoughts will be with you and your family this long weekend. As Jermiy said….come back and chat with us so WE can support and maybe give you advice that helps.
God Bless you and yours
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