almost new to this
AnonymousJune 21, 2007 at 9:19 pm
Hi I have a spouse who has been battling this virus since March 8 and is still in ICU.Does anyone out there have any words of wisdom as to what to do when they get delerium and start making no sense?He has had this gbs really bad full ventialtor feeding tube trac and all of the above.He can now move his fingers and toes somedays but I am told it could be about 6 more months before we even get out of ICU.Help I don’t want to say the wrong thing
AnonymousJune 21, 2007 at 11:35 pm
Has he received IVIG or Plasmaphresis? That will not cure the damage the immune system is doing to the attack on the myelin sheath aroud the peripheral nerves, but it should stop that attack. Then it takes time for the myelin to repair itself. GBS or [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly is different for everyone and depending on if you have a variant also it takes time to heal. REST is what the nerves need to heal and rehab is what the muscles need to gain strenght again. Keep things possitive! It is a scarey process. Ask him what he needs you to do to help. Somedays will be worse than others. Did you send for the information for caregivers? It is very helpful. You are here with family and tell him about us. Everyone here was in the hospital for different lenghts of time.
AnonymousJune 22, 2007 at 1:08 am
hi dreamseeker & welcome,
constantly remind him that he will make recovery. this is a miserable disorder, but the recovery rate is extremely high. let him know gbs stands for Get Better Slowly so he will know his slow recovery is normal. find out what he likes to do [ie. listen to music] & see that he gets it. neurontin for pian. plenty of rest is important. read this board to become more familiar w gbs. it is rough on the you too. we know. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJune 23, 2007 at 10:43 am
Thanks for your replies.Yes he has had two doses of five days each of ivg and has been on multiple narcotics for pain antibiotics for infections and has had blood clots in the lungs and abdomen from his feeding tube.He is now off the ventilator and was in a coma for 8 weeks.He is using a trac mask with a speaker valve but is having problems understanding why him and how long it will take to get better.All the positive talk seems to fall on deaf ears one minute i think he understands and the next he is cursing about something he thinks he is seeing but does not exist.The nurses have been for the most part pleasant but to see a doc is very rare they work the 8 to 4 shifts.He thinks he will be in the hospital for 6 more months but i am not sure.He keeps asking why he got this virus and I can only tell him he was the unlucky one because all of the possible reasons to get it ie previous surgery (had his bowels perfurate from croyns in November) flu , flu shot cold have all happened to him .I am just trying to make it day by day and i really enjoy the way you people share your bumps and roadblocks it gives me a beter understanding of the big picture .Thanks again
AnonymousJune 23, 2007 at 11:21 am
If you browse through the many stories in the forum you will get a good idea of what to expect……there are more questions than answers, each case being similar but vastly different!
I too experienced some “delirium” briefly at the point of my worst condition.
GBS is not a “virus”….it is an auto-immune disorder…..typically a virus or infection cause our own white blood cells to attack the covering of the nerves, then the nerves themselves.
Aside from the medical care, all you can do is hope and be supportive.
Getting GBS comes down to just BAD LUCK.
AnonymousJune 28, 2007 at 11:02 pm
I am sure it is very hard for you to see your loved one like this, as a patient it was really hard for me to see what it was doing to my family. Where are you located? I am sure that we have liasions nearby and many of us are always available by phone if needed. He had a very severe case from your description which I am sure has been traumatic for everyone. My email is jerimyschilz at hotmail dot com . I am happy to help however I can. Also please contact the foundation at the phone number listed on the main webpage, they will send you a packet of information that will be of help to both of you. Take care and you are both in my prayers.
[quote=dreamseeker49]Thanks for your replies.Yes he has had two doses of five days each of ivg and has been on multiple narcotics for pain antibiotics for infections and has had blood clots in the lungs and abdomen from his feeding tube.He is now off the ventilator and was in a coma for 8 weeks.He is using a trac mask with a speaker valve but is having problems understanding why him and how long it will take to get better.All the positive talk seems to fall on deaf ears one minute i think he understands and the next he is cursing about something he thinks he is seeing but does not exist.The nurses have been for the most part pleasant but to see a doc is very rare they work the 8 to 4 shifts.He thinks he will be in the hospital for 6 more months but i am not sure.He keeps asking why he got this virus and I can only tell him he was the unlucky one because all of the possible reasons to get it ie previous surgery (had his bowels perfurate from croyns in November) flu , flu shot cold have all happened to him .I am just trying to make it day by day and i really enjoy the way you people share your bumps and roadblocks it gives me a beter understanding of the big picture .Thanks again[/quote]
AnonymousJune 30, 2007 at 12:23 am
Dreamseeker, Welcome to the Family. Your spouse would have less delerium and better pain control with neurontin, not narcs. narcs don’t do as good a job as neurontin or lyrica does, they are made for nerve pain where narcs are not. Keep the atmosphere around him on a positive level, don’t allow negative close, sure it is good to keep him up to date on his health situation and life outside the hospital, but thats where the line should be drawn. Watch for depression, if it happens and he doesn’t seem to be able to handle it, then antidepressants are used. Ask as many questions as you have or just vent when you need to. Take care.
AnonymousJuly 4, 2007 at 7:54 pm
Thanks everyone I just got the phone call if everything goes well he will be tranferred from ICU on Friday to the neuro floor where he will receive more phisio.They have started to adjust his meds after my questions as a result of your comments.I know it is still a long haul but I do appreciate the chance to vent on this forum and get some pep talk. I have inquired many a time about a support group for spouses but have got no where.They might be able to get him someone to talk to that has been there and done it but I am waiting for him to be strong enough to make that decision I don’t want to burden him with too much.Again thankyou so much and I did receive an info book in the mail you are right it does have a lot of great insight.Here’s hoping all your days will be bright and the sun will warm your thoughts.
AnonymousJuly 12, 2007 at 7:57 pm
great news he came out of icu on Monday.He is still struggling with the adjustment but is making great progress.The docs have now figured out that a lot of his issues were due to the pain and anxiety meds they were pumping into him and they are now trying to ween him off them.This should help with the spinning rooms and seeing things.Thanks for being here for me I have found lots of great info on this site and continue to let him know that there are people out there who have been there and do it and there is light at the end of the tunnel .Have a great Friday the 13th .:)
AnonymousJuly 31, 2007 at 9:32 pm
Hi sorry I haven’t been on to give an update He found out last week that he has had a stroke while he was in icu that has affected the right side of his brain.The docs think it might have been caused by the ivg and the fact that he also has chroyns.Has any one else experienced this?Also last week his phisio lady told him he might not walk do to the drop foot they have tried splints and she wants to do botox on his ankles but I am not sure if that has been done either.This has been one heck of a week and it is getting tough to keep his spirits up.Everytime I turn around they are dropping bombshells on him when no one is around and leaving him to cry.Here’s hoping next week will be better.Thanks again for letting me get this off my chest he asked me why I don’t ever cry and my response was just not in this room Take care everyone and I hope you all have a great week
AnonymousAugust 1, 2007 at 12:07 pm
I am sorry to hear your husband has had a stroke to add complications to another medical condition. Just keep things possitive you can see just moving to a different room with just about the same care has given him so much hope. I don’t think they have given him much hope in rehab but that can definately change for the better too. What do they know at this point will happen he has a long recovery from GBS and will get better….it is not like a stroke that is a shorter period of time before they have an idea what has been effected. Some of the residuals they are seeing are from the GBS and will take longer to heal. Don’t let him give up and also don’t you give up! He is really in the early stages of all this. He needs to have hope and don’t let them take that away from him. Depression is part of the recovery of GBS that is all common and meds can be given along with verbal help to understand. Make a big deal out of any progress! He will be worn out from the fatigue from GBS. They will have to work him in rehab to over come what damage has been done by the stroke and he will have to relearn to do many things from both illnesses. They will have to watch him to make sure they don’t exhaust him and make the GBS kick back up, but also they have to learn now much rehab he can take with the stroke to make any gains. Gains from the stroke might be also compromised by the GBS because the muscle is not getting the message thru the nerve…that movement will help with the memory of the muscle. Once the sheath of the nerve heals he will get more and more of his movement back from the GBS….with a stroke they would have stopped with rehab much quicker thinking it was permanent damage. I hope this has made sense and it has helped. He will get much better from the GBS! I seen my husband come back quickly from a stroke and he has watched me struggle with the GBS. We now have grown closer as a couple. More patient with each other! Don’t forget age is tapping at the door and telling us to slow down too. Some of those younger people on here bounced back quicker. Take all conditions into consideration! Tell him to enjoy the journey…we have learned to listen to our bodies and end up learning more about our bodies thru this whole process. Start by working those face mucles and flash each other a smile…..it will mean so much to both of you! 🙂
AnonymousAugust 3, 2007 at 10:33 pm
Thankyou so much for your reply.You have answered so many of my questions and yes I have been very supportive of both of his conditions in fact I am the one is is constantly going to bat with the docs and pharmacist and phisio to make sure he is getting the best care possible.He seems to be fine one minute and then crying the next i told him that it would pass that he is just tired and reap the benifits of the tears (he will have a good complexion when it is all done from the extra moisture etc.).I really appreciate the effort that all of you has shown me over the nlast five months and i will continue to pray for your health as well as his thanks again .:)
AnonymousAugust 6, 2007 at 10:03 pm
Hi Dreamseeker….just a thought after reading your post and that your spouse is no longer on the vent. Have they checked y blood gasses? Disorentation, psychosis, hallucinations etc., are often the result of an infectious process or too much carbon dioxide in the blood. Make sure your spouse’s doctors check out each of these if the mental confusion is still there. From experience with my mom when my mom came off the vent. She could pull in enough oxygen but wasn’t strong enough to push out enough carbon dioxide. Sometimes coming off the vent everyone focuses on the oxygen but doesn’t check the carbon dioxide. She was steadily building up CO2 and became very psychotic. Too much CO2 = mental confusion. They check the blood gasses by drawing blood from an artery, not from a vein. Hope you guys are doing better. Hang in there.
AnonymousAugust 6, 2007 at 10:08 pm
Hi Dreamseeker. My response above was made to your post about delirium. Then after I posted it, I realized there was another whole page of posts and your question was an older one. Please forgive me my own lapse in mental status! Thinking of you and hoping you’ve had a good day today.
AnonymousAugust 14, 2007 at 10:22 pm
no need to apolgize i think i have had many i not with it moments.I just appreciate the fact that you read my thread and give me some info.He chose not to do the botox and now they want to send him home I guess he is not their golden egg anymore.Have a good night
AnonymousAugust 24, 2007 at 9:39 pm
Well It is now Friday night and as he would say only three more sleeps and we are on the move to Parkwood a rehabiltation hospital in LOndon ONtario.His spirits are kind of in the I am not sure mood but I have told him that there is only one way to go now and that is back down the hill to the smooth road.I have told him many a time about the info you have given me and I am very thankful.I realize it is going to be a long painfull road but we will get there after all it has taken us 178 days to get out of where we are now.If anyone has any words of wisdom for the future please go ahead he has managed to get to 70 degrees on the tilt table so far.This is a far cry from three weeks ago when he was told he may not walk again.I hope all of you are well and take care.
AnonymousApril 21, 2008 at 10:30 pm
welleveryone the journey has finally begun Al willbe coming home on May 2nd.He has spent the last 14 months in hospital and is coming along well .He stillhas a wheelchair and fancy braces and shoes to wear but he is able to walk with a walker for short distances.Our journey is still far fromover we still have three more surgeries to go to correct the tendons in his feet and hands so that he can do everyday things suchas dressing himself walking etc but the toughest battle of theraphy is eased.thankyou for keeping us in your prayers and we will try to update you soon take care
April 21, 2008 at 10:39 pm
What an amazing journey, I am so happy to hear what great progress your husband has made. How amazing that you have been by his side. Keep us posted on the continued progress!
Dawn Kevies mom
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