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My Mom is 59 years old and has been with GBS going on 5 months and 7 days to the date below you will see the dramatic steps of Dealing with GBS from another pair of eyes. I call it dramatic because Im the son of the patient and i have been by her side every single day for the past 5 months recording all the steps the viruse has brought upon my Mom, and staying in top of her condition and giving her all the support she needs with this difficult time in her life. So please if my story can help any body out there please take this and help your self and you love ones cope with this difficult viruse you will see the down fall and the recuperation and progress she is making.


7/25/06

On July the 18th my mom was a complaining of pain to her body some of the symptoms that she complained about was her feeling around her mouth numbness and tingling in her legs.
NEUROLOGIST =SNIDER
PULMONOLOGIST= BADER (LUGNS)
HEPHROLOGIST=ALI (KIDNEY) to regulate her high blood pressure added 3 more medications.
PRIMARY CARE=RAGAB
Earlier in the week Mom had complained about the symptoms but we were thinking that it was part of her medication with her high blood pressure and osteoporosis (arthritis) on her legs because she was getting so bad with her legs she was at a point that she was not able to walk as much as she was the previous days, she had told Ana that she had a high fever and she had some diarrhea and told Ana that she had drinked some bad milk which cause the diarrhea.
And prior to this she had gone to take some blood test because she was dealing with her blood pressure and thought the complications were her high blood pressure.
July the 19th A.M. Mom woke up with her entire body numb and called Ana in the morning at 5 a.m. and told her she was not able to walk because her body was very numb and told Ana that she could feel the tips of her fingers getting numb on her hands and feet, and she had to be taken to the hospital her body was being paralyzed little by little we took her over to Anaheim Memorial to emergency and she was taken in and they ran blood test did a kat scan took x-rays etc. did all the normal test when a person gets admitted to the hospital and after all that the tests came back negative and found nothing to be wrong with her and was told that it was her high blood pressure so she was released, one problem was they never questioned and saw her moving her body so they did no notice she was getting paralyzed.
July the 19th P.M. Mom was getting worse the minute she had already lost movement of her entire body and was at a point that was not able to move talk or explain her self only was able to communicate and tell us to move her with her head and was able to speak but very little enough to complain about the pain, so we called the Ambulance and Paramedics to pick her up at the house because we were not able to move her at all, paramedics came and she was taken over to west Anaheim hospital on Beach and Orange for her condition she was admitted to emergency and did all the normal process and after being in the emergency room she kept complaining about her legs hearting and wanted medication to stop the pain after maybe one hour she was given a shot to stop the pain at this point her face was already paralyzed on one side and was paralyzed from her body maybe 95% and was given the okay to go home with did not seem right but It was almost 4 in the morning and everyone was exhausted from the hole day I could see the pain in my moms face that she was not Okay no one at the hospital helped us comfort my mom and no one help us put her blouse back on her and we got a little help putting her on the wheel chair me and Oscar put her on the wheel chair by ourselves and they just opened the doors and let us out so we finish out the paperwork and I told the lady at the front desk to look at my mom that she was not right and she was in a lot of pain and she simple did not care so I go home to get another car because the car I had was too high and we could not put my mom in, so I went home and got another car and this was already like four in the morning , so I woke up my dad and asked him to help us out and he went back with me to the hospital to pick her up, so we go home and put a mattress on the floor to comfort mom better and move her around so we let her rest,
July 20th Rushed Mom back to the hospital because her condition was at her worst she was complaining so much about the pain we kept moving from one side to another and she kept saying that her heart was in a lot of pain and also her legs felt in bad pain and was not able to breath as well so we called paramedics and the Ambulance and took her back to Anaheim Memorial to Emergency and they could not find anything thru out the day they could not pin point her situation and what the cause was so she was admitted into the hospital from Emergency direct to ICU at this point her condition is so severe her respiratory is shutting down that is the biggest reason she is kept at the hospital for close observation , so we go thru out the day and no news was given to us, doctors are just stabilizing her body because of her high blood pressure and her osteoporosis , so we go out thru out the day and around 9 p.m. Ana comes out of the room after talking to the doctors and tells us they found out what it is its called GUILLAIN-BARRE SYNDROME so we get a sense of relive because we know the doctors found out what it is but we still don’t know anything about this syndrome and then we find out the details on the syndrome and how the body contracts this virus and after reading up on this we feel that the doctors are now on the right track because the symptoms are exactly how we saw mom deteriorating thru out the body so we finish up the day with a sense of relive.
July 21st her condition is getting worst because she still has some movement in her face but loosing them little by little along with some movement in her neck which is very unusual because she will respond and still move her neck with all the strength in her body but very little again but at this point with her status she is still holding on to this movement and I would say has some control because even though she can barely tell us with some expressions on her face we ask her to respond with that movement and she does.
July 22nd with conversations with the doctors and nurses in the ICU they let us know all we can do is wait because there is nothing for us to do but let the virus take its affect so we wait.
July 23rd thru the 26th her condition is the same but at this point she is loosing her facial movement in the face, the only movement she has is the movement in her left eye and that is the only way to communicate with her and give her all the hope in the world that everything is going to be Okay, so we motivate her as much as we can between all the family involved, DO NOT LOOSE HOPE KEEP ALL THE FAITH IN THE WORLD ALIVE.
July 27th at this point she has lost her facial movement and she could only move her neck very little, but she is having a lot of problems with her high blood pressure and it is uncontrollable.
July the 28th we were asked to schedule a meeting with the family on Monday, Monday came and no meeting we are suppose to talk about removing the tube out of her mouth and insert the tube thru the chest because of probable infections thru the mouth.
July 29th thru the 31st her high blood pressure is uncontrollable and the heart rate is going to low or jumping to high doctors are trying to stabilize her condition but the risk is to high at this point the machine is brought to the room incase her heart stops to do the shock treatment to revive the heart, on this date my mom was moving her neck and her mouth like but with strength and we believe that is the reason her condition is the way it is because she overworked herself trying to make some movements.
August 1st condition is stabilizing but still at big risk, at this point we agree to put a pacer in her heart to stabilize her heart beat and doctors have also talked to us about her breathing tube in her mouth it need to be changed to the chest so the operation is in process to be done for tomorrow.
August 2nd at about 10:00 a.m. mom is taken into surgery to move her feeding tube out of her mouth and inserted into her stomach, later on in the afternoon she is taken in surgery again to have the pacer for her heart inserted but they perform another surgery almost like a pacer but also inserted into the heart to stabilize her heart beat surgery goes good on both occasions.
August 3rd at 10:00 a.m. in the morning Mom is taken in for surgery to remove the tube from her mouth and inserted into her chest the operation takes on hour and she is brought back to C105 her condition is stable after surgery, at this stage she is still moving her neck and her jaw but very little but still does not open her eyes or any other parts of her body at this point we are letting her rest.
August 4th thru 9th mom has been stable with her condition her blood pressure and her heart rhythm have been under control she has been at a good pace, movement with her body are almost nothing, she must be relieved from not having the tube thru the mouth.
August 10th thru 12th she is taken of the sudation to see how much she is able to respond without the sudation , she is more active but she is too shaky she looks very impatient, we have questioned the nurses why she has been so long without the sudation and they say they want to see how much she responds with out it, but to us she is too long with out it and she is loosing control of her self and is looking to impatient and is getting everybody nerves to see her in that situation.
August 12th I run into the lung doctor in the hall way of the hospital and question him why my mom is off the sudation and he tells me he never gave or singed off to stop it, So he walked over with me to ICU2 to speak to the nurse that was on shift this day and asked her why she was of the sudation and tells her that he never signed off or gave the order to keep her off the medicine, so she is put back on at this point my mom’s blood pressure is at 233 on the monition and her heart rate is at around 130’s plus or minus, by the afternoon her condition is either to high or too low her heart beat on the monitor is dropping dramatically and is getting very tense just watching her go thru this again, so we ask to talk to the doctor in charge of her heart, so he is called in at this point it is close to midnight so he comes in and then he calls another doctor for the heart, so we agree to put the temporary pace maker again for the heart so she is signed on to put the pacer on her heart this time is not thru the side of the neck but thru her lower body, So she gets the temporary pacer surgery and they are done by 1:00 a.m. in the morning everything goes good in surgery and she is back under control.
August 14th thru the 16th mom is Stable
August 17th moms blood pressure drops too low in the 50’s at about 12:00 midnight she is under very close observation and is receiving more attention than usual her heart beat dropped once in to the 50’s on the monitor and the pacer kicks in and spikes once to bump the beat to a higher rhythm, again she is very fragile and movements in her body cause her to drop or pick up her blood pressure and also her heart beat its either up or down.
August 18th thru the 20th her condition is stable but she is set to get the permanent pace maker for her heart on the 21st after it has been decided that it is in her best interest because of her heart condition to stabilize her heart rhythm.
August 21st she gets her permanent pace maker and surgery goes good with no complications.
August 22nd thru 23rd is she is stable but not conscious enough to see any movement of improvement but she has gone thru so much including part of the surgery for the pace maker for her heart.
August the 24th she is cut of sedation and mom is getting impatient because she is more alert to what is going on by this date the doctors have told us that they want to move her to a Rehab center because from what they can see is that they have done all they can here for her at the emergency center her in the Anaheim Memorial so we need to start looking into the Rehab centers they want to move her to.
August 25th her eyes stated opening up this is a big break with her condition this is a sign of improvement that her condition is reversing itself this is a big shock to all and a prayer being answered.
August 26th she started talking for the first time since July the 19th since she was admitted to the hospital and lost conscious she still has the tray to help her with her breathing because she is still not able to breath on her own but with this in place she is talking very little and very slow but the nurses told us to try not to talk to her because she is hurting herself in her throat when she does that and forces herself again another big break thru with the virus affecting her.
August 27th she is trying to talk but is under a small doze of sudation so she wont feel impatient.
August 27th sitting here in the room with her she is showing sign of improvement she wants to be able to talk but she cant.
August 28th she is taken to a Rehab center on Beach blvd in Buena park Ca.
August 28th is her first night by herself because they do not allow us to stay with her in the room so she will be alone for the first night since July 19th we are not very comfortable with her staying the nights by her self but they will not allow us to, this is a very difficult moment to leave her alone specially when she cant do anything for herself.
August 29th she is throwing up yellow fluid but the nurses tell us it is gases from her stomach also mom told me a 2 days ago that she was not able to go to the restroom that may be the cause for the yellow fluid she is throwing up.
August 30th thru September 6th stable condition
September 5th Mom started moving her right foot you can see her toes moving just a bit not a how lot.
September 6th thru 7th Mom Started talking with us she still has the trike (tube) in her chest for the lungs to help her breath because she still cannot breath on her own she has asked me to ask the doctors to see if they can put another device on her so she can talk I called doctor Ragab and he said not at this point because her lungs are still weak also he said she will regain strength in her bigger muscles first.
September 8th thru 10th mom complaining about her breathing she says she is only able to get a 3 % out of 10% of her air flow that is how she feels and you can see at this time she is gasping for air and looks like she is barely breathing
September 10th after seeing and hearing mom complaining about her breathing I have asked the head nurse Gill that mom need special treatment she needs to be moved back to the hospital and after talking the her doctor and her doctor seeing mom they give us the Okay that she needs to be transferred back to the hospital so she is sent to Anaheim Memorial for evaluation.
Sept 10th thru 18th after coming back to the hospital for breathing complication it is confirmed that mom caught nammonia and 3 infections one to her Urine and one to her lungs and one to her blood so she is kept under close observation for breathing problems and is given various antibiotics to fight the infections and 2 pints of blood because it is needed and little by little she is doing better with her breathing and she looks like her chest congestion is clearing up.
Sept 19th we have been told by the doctors that mom is doing better and she needs to be moved back to the rehab home for recovery, we don’t agree with this we feel she needs to be in the hospital for another couple of days because of the better care and constant supervision but the hospital makes the decision and she is taken back to the rehab.
Sept 20th thru 28th Mom is back at the rehab home and doing better she her ammonia has gone away and her infections have cleaned up, but still complaining somewhat about her breathing she still feels that her chest is congested and needs more attention , I talked to Ragab (her doctor) and asked him if they can change or check her medication and he has agreed and the change will be effective this afternoon of the 27th so this was a good call she feels better with the change in the medicine.
Sept 29th this is the first day that mom has tasted something thru the mouth since July 19th since she was taken in for GBS she was given apple sauce to test to see if she was able to digest her food and all went well Mom’s comment was that it tasted so good and she would like to get this test again.
Sept 30th thru October 9th mom is feeling better with her symptoms she is doing a lot better she is talking when she can because most of the time she don’t get her air right so it is difficult for her to talk but in general she is comfortable and feeling some of her muscles healing because she says some of her muscles in her upper back and the back of her shoulders get jumpy every now and then.
October 10th she is tested again with her feeding and all goes well.
October 11th and 12th she is feeling okay no complications she is alert and looking very promising and making progress, after testing her today she is able to move her right foot very little and I can tell she is getting some movement with her left foot as well, she is able to move her shoulders ,from what I can see she is making good improvement and she has the spirit to move forward and is looking forward to start moving her body.
October 13th thru November 5th Mom is making very good progress she has not had any complications she has movement in her right and left legs and feet she is able to move her shoulders but no movement in her arms or hands she has been making good progress.
November 6th thru December 21st Mom has been feeling okay, Overall she has been making progress with GBS, she has just completed a total of 5 months in bed paralyzed she is getting some muscles back, most of the muscles coming back are the larger muscles all her fingers from her hands are still paralyzed at this stage she is able to push with her arms but since her hands are still paralyzed I feel by the way she moves her muscles are paralyzed some where in between her elbow and her hands I would say closer to her hands , she is almost at a point that she will get some muscles near her wrist she is not able to lift up, her legs the same way she is able to push her legs but not able to lift for the same reason as her hands , We have one major obstacle to overcome at this point and that is bed soars she has been laying in bed for 5 months and this is something you don’t worry about in the beginning but now it is a problem and we are starting to see signs of redness on certain pressure points of the body where is constantly laying on , the nurses at the rehab move her every two hours but still she needs more movement specially at this time and stage of her decease with GBS, So at this point we still have to keep the momentum going and push ahead and help her as much as we can by exercising her as much as we can and move her as much as we can, also the big area we have to concentrate on is making sure she gets her medicines on time because her bones hurt she has constant aches and pain all over her body.
December 21st thru December 26th mom was able to drag her arm and actually flipped her wrist and hand this was the first time she was able to do this, so this is a major forward movement, but the next day she was not able to do this, but that was okay that was a sign of improvement with her muscles , very good.

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I contracted GBS last year, July 2005, after having surgery twice. My experience was much the same but I was learning to walk after 6 weeks. GBS can be very serious. I hope that your Mom recovers fully. I am 42 years old and still not fully recovered. Sometime I feel that I am just a big bundle of nerves so keep as much stress from your mom as possible. My daughter has been there for me also. There were times in therapy where i wanted to give up but she kept reminding me of why it was so important. Depression is something that she may face, just be there, it helps more than you know. I have lost my job, returned to school and am retraining for a new occupation. This is something I should have done long ago so positive things have come from having GBS.
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How bad did you get GBS, How long were you not able to move you muscles and what type of treatments were you on. My mom is getting her muscles back but very slow. she is still 100 dependent on someone's help, she is not able to move her hands but we feel the muscles are slowly comming back near her wrist, but like you said having someone there all the time is good makes time go quicker, the hole family has come together to her help in this time of need, the nurses say it is unusual to see us the way we are. We have 4 brothers and 1 sister and of course my dad and we are allways there to help her out during the week, and on the weekends the aunts and uncles are there as well. what are the symptoms you face now after recovering from GBS.


Sal
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