Update about dad and questions
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June 6, 2007 at 1:06 pm
Hello everyone, I hope I get a lot of responses. My dad was diagnosed with GBS and the Miller Fisher Variant about 5 weeks ago. He has been off the vent for about 3 days now and getting pneumonia again. He is hallicunating again pretty bad, and he can’t go to the bathroom so they had to put the cathetar back in. He had the IVIG several times, and continues to regress every week with his symptoms. Is this normal, any advice for the doctors. Maybe they can be giving him something or doing something that they arent doing???? Thanks, Kim
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June 6, 2007 at 1:45 pm
kim,
pneumonia & gbs do not mix well together. they must treat the pneumonia aggressively. how many times has her gotten pneumonia? i assume he has a respiratory specialist. is he/she doing everything possible? this regression – is it more than his lungs? how many times has he been given ivig? does it seem to help any at all? pls keep your posts on one thread or it is difficult for us to follow his history. take care. be well.
gene gbs 8-99
in numbers there is strength -
June 6, 2007 at 2:24 pm
Hi, This is his 3 time getting pneumonia in the last 6 weeks. He does have a resp therapist and has been on breathing treatments. He has a Trache that was put in almost a week ago because his breathing was bad again, but then they keep taking him off of the vent and just giving him a little oxygen. He had the IVIG the first 2 weeks and it didn’t seem to do anything for him. I know this is a get better slowly illness, but it seems like every day he takes a few steps forward and then has to take a few steps back. I am so worried about him and hoping that I am doing everything that I can for my father. Any advice would help. Thanks, Kim
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June 6, 2007 at 2:37 pm
Hi Kim, stay strong, even though it is hard. I was wondering about infection being connected to worsening symptoms today regarding Kevin and a flare up he had in March. His toenails kept getting infected and he would have to have them removed. Anyway, since then, he really has had no set backs. Could it be possible that the pneumonia is hampering the “halting” process expected with the ivig? Have they considerd plasma pheresis? Perhaps the new infection of pneumonia essentially is continuing the process since the ivig has not been able to halt it. Good luck to you and I will pray for you and your dad tonight. Dawn Kevies mom 😮
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June 6, 2007 at 3:47 pm
I am not sure if the pneumonia infection is hampering the positive effects of the IVIG. He didn’t do the plasma because he told Stanford he didnt’ want to do it. Thank you for your prayers and I will keep you and your family in my prayers as well. Kim
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June 6, 2007 at 4:23 pm
kim,
dawn makes a good point abt whether infection is causing his lack of any recovery. i assume you do mean he is getting worse as opposed to staying the same. another lp & ncv will tell if he his actually still under attack or if he just can’t make recovery at this stage due to whatever ie. pneumonia. take care. be well.
gene gbs 8-99
in numbers there is strength -
June 6, 2007 at 9:44 pm
Kim, sorry to hear about your dad’s setbacks. Try to keep up the positive attitude. Fighting the pneumonia is really important. have they done any testing of the lung discharge? i would think they would make sure they are treating the infection correctly, with the right antibiotics. i would also check about doing pp after the lungs are cleared. if ivig didn’t show improvement the pp might. take care.
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June 6, 2007 at 10:31 pm
I know how hard it is to see some one slide backwards even a little step. My Doctors did not feel the IVIG worked for me and they transferred me to another hospital that could adminster the Plasma Pheresis. I also got pneumonia about 5 weeks into my treatments. I was in the hospital for 9 weeks and had the trache still in until after Christmas. They said I might have to go home with the trache. I am glad that did not happen. They were not in a hurry to take it out they wanted to leave it in until they could see how I responded to exercise. I know it is hard to keep everyone thinking possitive but hand in there. You will find that everyone’s case is so different but we all are extremely closely related too. We are thinking of your family and hope you will come back here to let your extended family know how he is doing.
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June 10, 2007 at 7:21 pm
Hi Everyone,
Well, my dad now has staph colonizing in his system. He doesn’t want us to come and see him until he is not contagious. He’s such a good dad. The nurse told me today that he was communcating by writing on his paper, and was getting up to go on a walk today. She said the labs looked better today. I got the wonderful packet from the foundation in the mail. I can’t wait to share all the great information with my dad. He still can’t swallow yet, so he is being fed through the feeding tube. He was hospitalized on April 29th. Hope all is well with everybody. Take Care, Kim
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June 16, 2007 at 1:38 pm
Well, Dad is still the same per the doctors and nurses. They don’t tell me too much information. His bladder isn’t working the right way, and still has some sort of infection in his system. It’s been almost 8 weeks of being in the hospital. Dad is getting very lonely and bored. Does anybody live in the Sacramento, CA area. Anyways, to all those Father’s out there Happy Fathers Day tomorrow!!!! Thanks, Kim
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June 20, 2007 at 9:08 pm
Hi Everyone,
Well, after 7 long weeks my dad was transferred to a rehab center yesterday. My grandmother went to see him today and he was on the exercise bike for 6 minutes, and went for a walk. She said he looked great. The staph infection is gone , so now we just need the swallowing to come back, and the bladder control. I am going to see him Sunday so I will let you all know. Has anybody been through along time with feeding tube, trach tube, and cathetar? Any advice? Thanks, Kim
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