Dear Moms I Need Help
Hi,
I am sorry to be dragging my sorry behind in here when so often I'm absent... but I really need your help... Information, advice, prayers. My brother Johnny was admitted to the hospital 2 weeks ago tomorrow... He'd gone to the emergency room the day before complaining that his legs felt so week he couldn't hardly walk... lots of tingling... and weak and rubbery feeling that had been going on for about a week... The drs did some tests... and they found a tumor on his kidney that they said might account for the weakness and tingling... said they'd be operating within two weeks to remove it... gave him a shot that was supposed to help in the meantime and sent him home... but on Monday morning when he woke up he couldn't move... he was pretty much immobile in his legs and limited movement of his arms... he ended up calling an ambulance... so back to the hospital... buy Tuesday after a bunch more tests they said they thought he had Guillain Barre Syndrome...
Johnny is not one to go to drs... just want you to know he was pretty bad off or he wouldn't have gone then... but now here he is... laying on a bed... immobile... like a bug pinned to a board... Its rough... and then the pain... He didn't complain about pain till about the 5th day... but its been relentless... Does anyone know about how long this part lasts...
I feel so bad for him but all I can do is talk and listen and pray... I've had friends and family praying too and I'm very grateful...
They called me Thursday, Thanksgiving Day... Johnny had a reaction to the treatment... IVIG and was unable to breathe... his kidneys weren't working... things were looking grim... they moved him to ICU... they put him on a ventillator, sedated him to where they said he was not concious... and started talking about dialysis... Firday things stayed pretty much the same... On Saturday in spite of the fact they'd strapped his arms down to prevent it Johnny got that darn ventillator out and lo and behold he's breathing on his own... and his kidneys are functioning... and... they just called... He's been kicked out of ICU... Oh I am so grateful... he's back in a room...
And I'm worried about the tumor but for now just glad he's breathing and peeing... LOL get the pain fixed... get rid of the devestation that GBS is doing to his nervous system and then Lord I need you to take the tumor away and let it be benign... or if not let them get it all out in the surgery....
Its gonna be a battle... I got that... but the pain thing really worries me... I'm not good with pain... so my heart aches for him... does anyone know something they can share that will help. Thanks. Hugs Elissa
PS I went to the GBS group... not much help... I did get one response from a very nice lady named leesa... they're just not very active... I thought to myself I am so glad it wasn't like that when I came here looking for support and advice after my daughter crossed... there were discussion topics and posts that I found helpful and I'm going to go look for ones specifically addressing the pain...
I am sorry to be dragging my sorry behind in here when so often I'm absent... but I really need your help... Information, advice, prayers. My brother Johnny was admitted to the hospital 2 weeks ago tomorrow... He'd gone to the emergency room the day before complaining that his legs felt so week he couldn't hardly walk... lots of tingling... and weak and rubbery feeling that had been going on for about a week... The drs did some tests... and they found a tumor on his kidney that they said might account for the weakness and tingling... said they'd be operating within two weeks to remove it... gave him a shot that was supposed to help in the meantime and sent him home... but on Monday morning when he woke up he couldn't move... he was pretty much immobile in his legs and limited movement of his arms... he ended up calling an ambulance... so back to the hospital... buy Tuesday after a bunch more tests they said they thought he had Guillain Barre Syndrome...
Johnny is not one to go to drs... just want you to know he was pretty bad off or he wouldn't have gone then... but now here he is... laying on a bed... immobile... like a bug pinned to a board... Its rough... and then the pain... He didn't complain about pain till about the 5th day... but its been relentless... Does anyone know about how long this part lasts...
I feel so bad for him but all I can do is talk and listen and pray... I've had friends and family praying too and I'm very grateful...
They called me Thursday, Thanksgiving Day... Johnny had a reaction to the treatment... IVIG and was unable to breathe... his kidneys weren't working... things were looking grim... they moved him to ICU... they put him on a ventillator, sedated him to where they said he was not concious... and started talking about dialysis... Firday things stayed pretty much the same... On Saturday in spite of the fact they'd strapped his arms down to prevent it Johnny got that darn ventillator out and lo and behold he's breathing on his own... and his kidneys are functioning... and... they just called... He's been kicked out of ICU... Oh I am so grateful... he's back in a room...
And I'm worried about the tumor but for now just glad he's breathing and peeing... LOL get the pain fixed... get rid of the devestation that GBS is doing to his nervous system and then Lord I need you to take the tumor away and let it be benign... or if not let them get it all out in the surgery....
Its gonna be a battle... I got that... but the pain thing really worries me... I'm not good with pain... so my heart aches for him... does anyone know something they can share that will help. Thanks. Hugs Elissa
PS I went to the GBS group... not much help... I did get one response from a very nice lady named leesa... they're just not very active... I thought to myself I am so glad it wasn't like that when I came here looking for support and advice after my daughter crossed... there were discussion topics and posts that I found helpful and I'm going to go look for ones specifically addressing the pain...
Replies
Expectations (prognosis)
Recovery can take weeks, months, or years. Most people survive and recover completely. According to the National Institute of Neurological Disorders and Stroke, about 30% of patients still have some weakness after 3 years. Mild weakness may persist for some people.
A patient\'s outcome is most likely to be very good when the symptoms go away within 3 weeks after they first started
You have probably read all of this stuff already but a positive out come is possible. I would recommend that someone work with him on his pain....pain management - there out to be someone at the hospital but you can practice or do it with him. Sort of like child birth breathing. This will help his lungs at this crucial time, get the blood flowing. He has to close his eyes and think of some safe place he doesn\'t have to tell you where that is....could be grandma\'s lap or fishin whatever. Then, he needs to take a long steady breath in through his mouth and then evenly release it to flush the bad things away. Sort of like YOGA. Then make sure they are addressing the pain with proper pain meds...vicoden or something. I think for you to help him through the pain will make you feel better and you are helping him. Hold his hand or bring lotions for relaxation and rub his feet and chest. Chamomile and Lavender would be good to start. Do not stop fighting he must hear this from you and all others. If he caves and just gives into it.....I don\'t believe there will be a good result.....How about low tranquility music....like when you get a massage all of these things could relax his body and mind. It is amazing what the mind can do!
Mary has given you some wonderful information and options. You are doing all that you can to be supportive and this is when you need to \"hound\" the docs/ nurses etc., for more information about this disease and the management of his pain. Perhaps ask for a family consult where you have your family and all the team players involved in his medical care in attendance. We have these all the time at my hospital where I work and they are vital for everyone to be on the same page. It is a right that you have so don\'t allow them to tell you that it is not \"needed\" because if you\'re feeling the way that you are it IS needed.
Sending loving affirmations of comfort to your dear brother and to all of you who love him.
Please keep us posted my friend!
Love and hugs, Joanie