Wife put on a Ventilator last night

Hi Justin

So sorry to hear your story. With GBS nothing is normal. I have had great hope from hearing the stories of others who locked-up and went on to recover. Ivan, a former patient sat in my living room after 4 years of struggle. His case was far worse than my ‘mild’ one. He looked me in the eye and said he recovered. His hulking 6’6″ body was convincing. Ivan wouldn’t let me think otherwise.

There are choices in how you decide to proceed. No road is easy, but from who i have talked to, hope and belief in recovery seems the most successful. As a teacher I tell my students to always shoot for 100% on their assignments, I hope you take the route that understands the difficulties ahead but also keeps an eye on a full recovery. Most do recover and there is no reason to think otherwise for your wife.

That you are on this forum looking for answers is a good sign. Fight the good fight, never say die.

Wishing you positive thoughts at this dark time, believe that it will pass

Welcome to the forums Justin. I am so sorry you had to find us, but am glad you did. I don’t have personal experience about the vent, but others here do and will surely help you understand that part of it.

Please accept our prayers and the information we have to share with you.

What brought on your wife’s GBS, if you know?

Hello Justin,

I am very sorry to read of your wife being put on a ventilator as a result of GBS. Although I was paralyzed from the neck down, I was fortunate not to be placed on a ventilator. During my hospital stay, however, my neuro sent a recovering GBS patient to my room who had been on a ventilator. Similar to your wife, she had gone from healthy to vent in about 5 days. She was 7 months into her recovery and was doing quite well.

My prayer is for healing for your wife. And patience for you as you care for her and your family. It is a tough journey you are both on. Remain resolute in your faith……….I had many people praying for me and when I was strong enough to walk…….I shared the words of the Psalmist 40:1-3 in front of my church congregation. It is my sincere hope that your wife will soon be able to say the same. Take care and know there are others who are concerned about what happens.

Hello Justin sorry you had to find the forums this way.There are many things to say and not say but she will get past this and it will depend on her strength and at what stage of GBS she is in.Please check to see or call the foundation they will help you and supply you with any information they can .Also try to find GB syndrome from diagnosis to recovery book written by Parry and Joel Steinberg MD.You may be on a roller coaster at this time some days good others not but she will get past this.I was on a vent and i know time can not go fast enough.Be strong yourself .You and your family are in our prayers,we are here and everyone at the foundation and the forums will support you. Talk to her and reasure her she will get past this.

Hi Justin,
When I went down in 2008 I went all the way down. I made a really fast, nearly complete recovery so please keep that in mind. Right now though you both need as much support as you can get. When I went down my family and I had the infinite good fortune of having a coach who had gone through it 13 years before. He was able to tell us what was going to happen before it did which really reduced the anxiety all around. Oddly enough, I don’t think he was even tied to GBS International.
You now have hundreds of good coaches so ask anything. The smallest thing can help.
My best tip because it really helped me a LOT? If she goes down as far as I did she will not be able to communicate with you in any way. She will, however, be able to hear you. I could hear everything. I just couldn’t acknowledge it. So talk to her, read to her, mix it up with a favorite TV show. All I ever had available was Divorce Court so that didn’t count for me, but whatever. You being there for her will be her absolute anchor when everything around her is coming apart at the seams. Try and mix it up with other family members if possible. And it can get frustrating. I can remember my girlfriend, kids and brother all crying around me at one point. I thought they were crying because they thought they were losing me. That was frustrating because I couldn’t let them know I WAS coming back. So this is a time for her support. Be there for her. And whenever you need it jump into this forum. We’ll be there for you.
Cheers!
Johnny Mac

Hi Justin ~ I am so sorry that you find yourselves in such a freightening situation. I was never on a ventilator “but” I did develope a rare lung disease which first presented itself as a pneumonia – that was 15 years ago! Don’t ever give up hope and keep encouraging your wife. Has she seen the little ones yet, even a “peak”? When she is no longer in a contagious state, just seeing her babies could mark a turn around for her, as I am sure she is missing them bunches! I know that you may have to fight beauracracy {I know that’s not correct spelling:o I mean the “big guys”}but don’t give up – you are her advocate which is extremely important. Often a “chaplain” can be a secondary advocate. Just know that this big, wonderful family is here to listen and help. There are No dumb questions:)

Justin: The hospital may have communication tools: handheld texting boards, communication cards, etc., so you don’t have to rely on just reading lips. Bring a pad and pen to the bedside for her also. She is frightened by this vent stuff. I was vented 9 weeks with a tracheostomy as well. No voice, no fun, and scary.
Ask her about her needs frequently. Ask the social worker or the speech pathologist for the tools I recommended above. You can only provide love and support at this time. The medical stuff is up to them. Stay on top of them and get an update every time you visit. See the doctor who is in charge of her case. Make sure her lungs are clear. I was vented because of pneumonia.
Time is the enemy: laying there and staring at the ceiling. Get her a headset for music is she wants one. Massage her feet to distract her. Be there as much as you can. Maybe her close friends can be there too. Don’t all be there at once. She may not want anyone: so ask her.
See if you can get a former GBS patient to visit her. Call this foundation or email them for a connection.
Stay strong – this will pass in time. PATIENCE is the key. Time and patience.

Justin,

My heart breaks for you and your family. This is such a horrible thing to have to go through. My prayers are with you. Just hang on tight to hope and try to be there for your wife as much as you can, but make sure you take care of yourself and your little ones. The people on this forum are wonderful and will help you as much as you need it……

Yeah, Hedley’s right. I forgot about that. The hospital I was in didn’t really have that kind of stuff so Wendy went out and bought a cookie sheet and a set of kid’s magnetic alphabet letters. Still on ventilation, as soon as I was able to move my arms again I was really spastic but my first sentence was, “I want a f____ing beer.” My son was the first to figure out what I was “saying” and started crying because he knew I was back. The sense of relief in the room was intense. Pretty soon I was going fast enough that people were having a hard time keeping up with my pointing. Oddly enough, doctors were the worst. Go figure. Anyway, that got frustrating. That reminds me. Communicating at times may be frustrating, but you all have to remember that you ARE communicating. And you WILL get through it.
Cheers!
Johnny Mac

Something else I almost forgot Justin. Before I was unable to communicate at all, my coach told me what was going to happen in the next few hours/days and that eventually I may be unable to communicate. So he said to “be ready to go someplace happy in your head because you may have to stay there for awhile”. That turned out to be too true. I had recently gotten a new
5-speed for my old Corvette, but I had not installed it yet. So that’s what I did over the next couple of weeks. I can remember a couple of times when nurses would come in to fuss over this and that and I’m like, “Argh, you’re interrupting my transmission work!”. It really helped me though.
Cheers!
Johnny Mac

Justin,

I too went from being healthy to being totally paralyzed and on a ventilator, within days. I also got double pneumonia. I had a 2 year old son and was pregnant with my second child when all this happened.

Your wife is probably terrified. A machine is breathing for her and she is feeling so ill that she may be doubting that she can survive. The ventilator is frightening and your first inclination is to fight it. It is unnatural for air to be forced into your lungs. The sound of it, alone, is unnerving. To communicate, write words like YES, NO, PAIN, DOCTOR, NURSE, etc. on a board and have her blink, if she can. You can also write yes or no questions and have her blink once for yes and twice for no.

The most important thing is to just be there for her. Tell her she will get off the ventilator; she will walk again; she will play with her children again. DO NOT LET HER GIVE UP and don’t you give up on her. Tell her you have communicated with others who have been exactly where she is now, and they survived and recovered.

God Bless

I was put on a respirator and then trached and ventilated. I don’t remember much of that, but that is because I was very sedated. Apparently, I could still communicate somewhat with the help of eye blinks and a letter card.

I would reccommend having them sedate her more. It may wipe out her memory of this time, but I believe it may have been for the best for me.

Remember, she CAN and WILL still be able to hear and understand what is going on around her. Even very sedated, I have things that filtered through. Most of them are fine, but a few were wierd because of the TV channels that they left on in my room.

Play music that she likes, talk about her kids, what you and they did together.

If she says or looks like she is in pain, make them give her pain medication. Meds like Neurontin, Cymbalta, Lyrica all help for the nerve pain. For immediate relief of the worst of it, Morphine can be given but she will have to be weaned off of it later.

Have them provide her with range of motion Physical Therapy and don’t let them forget to stretch those back muscles too. I didn’t have any back stretching while I was waiting for healing and when they went to move me for x-rays, because I had pneumonia, it hurt like crazy to be pulled forwar a few inches for the film to be placed behind me.

If I have repeated anything, I’m sorry. All of the information we provide here is ment to help and to ease your worry. Things WILL get better. It will probably be much slower than either of you want, but it WILL happen.

Keep leaning on God. He is the only reason I am here today. He healed me and has provided me opportunities I never would have thought existed before the GBS.

Tonya Correll

Boomerbabe and Dolphinlvr are right on. And don’t forget to ask for those “Moonboot” things. If you stay prone on your back for long periods of time the muscles and tendons in the back of your calves and ankles will shorten up and you will be locked in the toe pointing mode. We were told that’s really painful to recover from. Wearing the moonboots keep your muscles stretched as if you are standing. Worked for me.
Cheers!
Johnny Mac

[QUOTE=necer1]Thanks again everyone. She is doing much better today. They even started to wean her off the vent. She told me she loves me with a letter board and smiled when I figured it out. We are thanking God for her progress and praying it continues.[/QUOTE]
Wow, that’s a great sign Necer, I am so hopeful for your wife and for you.

I think about what my wife Lisa has been through with this. GBS is not suffered by the patient alone. Oh how difficult it would have been without her.

One thing that I have appreciated it her resolve to not let me go negative. I even offered to sell some equipment to pay off bills, she wouldn’t have it. You have to understand that pre-GBS she would have been setting up the craigslist posts herself to sell this stuff. She hated it being around because it does take up a lot of room in our small century-home. She can’t even stand the type of guitar-style I generally like to play (LOUD BABY!!!). However, I knew she was serious the last time when she said she would be burying me in my amps:) .

Anyway, I talk too much about myself, as it seems we tend to do a lot on this site. GBS is tough, there is no denying that. but there are hopeful stories out there; please dont lose sight of this. There are things that you can do to help her.

You are gonna be busy still doing the physical raising of your kids; take every bit of help that is offered. This is no time for foolish pride. Savour those home-cooked meals that friends and family drop-off. Graciously accept a neighbors offer to mow the lawn, etc, etc, etc.

Encourage her; I’m not saying tough love but help to keep her focused. HOPE! You mention you are a Christian, may I recommend that you re-read and re-evaluate the importance of 1 Corinthians 13 at this time. I’m not even spiritual and have taken great comfort from these words.

If you dig giving her massages now is your time to shine. When she is ready for one she will appreciate having her muscles stretched and rubbed.

Your intimacy is none of my business, but please know that gentleness and cuddling feel great when trying to get past GBS pain. There is a thread that’s called ‘dare I ask about sexual dysfunction’ that is definitely not an X-rated novel. It instead reads like a guide of how to keep physical love (not necessarily sex) alive and enjoyable during GBS. Touch is never so important as when you lose it.

I’m throwing so much at you and forgetting the immediate situation! While she stabilizes and gets back some basics at the hospital keep an eye on everything. Hospitals by many accounts are competent but when they aren’t watch everyone. Right now she needs REST and she wont get that in a room with seriously problematic patients (nighttime is a scary place for a lot of patients). Stay on top of this. Where a nursing staff might ignore the requests of a patient, they can be responsive when some tough loved ones kick them in the pants. My experience was that they are not all bad.

Sorry to blab, just wanna help you here friend. I wish you strength. Stay hopeful. Even with your love, some days will be dark. But most will be tolerable and many can actually be bright if you celebrate everything she regains.

Peace

This is exciting news!! How good it must have felt to see her first words 🙂 Sure you still have “hills” to climb but together makes is so much easier. My husband has cared for me for 15 years and I wouldn’t have made it with out him – seriously. Even while still on oxygen in the hospital, my dearest would crawl onto the bed beside me and take a nap. Those times were so precious for both of us and we both got the best of sleep 😀 Unless a doctor came by the nurses wouldn’t let anyone bother us for an hour. Remember that you know your wife and her needs better than anyone so now begins your time to “advocate” for her.Some days will be tougher than others 😮 but you can do this because of your love for her! And we are here waiting for your reports and to support both of you in any way we can.

Can your wife speak? If so, that is great. My vocal cords were paralyzed and I had to continue to communicate by blinking yes or no for weeks. She seems to be improving fast. That is wonderful news! How are your kids doing?

necer,
That is great news.
Wishing her continued improvement.
Please keep us updated on her progress.
Shirley

What kind of treatment did they do on your wife this past week?????

Her legs will be the last to start coming back. Mine began with large muscle groups and gradually went to the smaller muscle groups. I am super happy that she is getting better so quickly! Keep praying and keep encouraging her.

Tonya Correll

Hi Necer,

Now that she is done with Ivig are they talking about rehap, maybe at another hospital? She sounds like she is making great progress!

Mark.

Necer,

Tell us how she does on her first day of rehab.

[QUOTE=necer1]Thanks for asking…They are talking about rehab. There is actually a rehab facility on the top floor of the hospital she is at. They are talking about getting her up there as soon as possible. The Dr. wants to try to get her up their sometime this week. :)[/QUOTE]
Hey Necer

So glad to hear that things are looking up.

If you have the time, look into what your options are for local physiotherapy. As soon as your wife is stable enough I suggest getting her out. Having a local physio helps. Also, if you can, attend some rehab with her. Observe what they are having her do and consider whether you can do this with her at home. Lots can be done with theraband. Craigslist sites are bursting with used gym equipment especially now while the economy is in the dump.

Best of luck and stay strong!

That’s great news Justin! And NGG’s idea about therabands can even start now with her arms. tie one end off on the bed rail and have her do curls and shoulder lifts. Once she can lever herself up to a sitting position she can start thinking about sitting in a cardiac chair. Then a wheel chair. I can’t tell you the sense of accomplishment I had when I was first able to sit up. Next will be the wheelchair. Hopefully she will soon be able to get herself into a sitting position and swing her legs so she can (with your help) plop into the wheelchair.
Standing for the first time was challenging, but she’ll get it. All that nerve communication has been disrupted and has to be re-learned. I found that for me each one was a step to walking unaided again. Standing with help, standing up by yourself (that big head of ours weighs a lot and is really hard to balance), walking with parallel bars, walking with a walker, walking with two canes, walking with one cane and finally wrapping that last cane around a tree. I think it’s still there! So you guys are on the road. Way to go!
Cheers!
Johnny Mac

Necer,

Everyone doesn’t respond to rehab the same, but my Neurologist said that as are nerves start working again, then your muscles just start working. In the hospital when I first tried it, I could only sit-up in a chair for 20 minutes. In a day or two I was up to an hour.

Mark.

My heart broke when I read your first post. Such a horrible, scary time! I am so please your wife is doing better – – it will be tough as she starts to relearn things, and then in a few months when she looks well so everyone will expect her to be so. That is my real problem now – I look healthy so I must be healthy when all I want to do some days is just sleep. My beloved husband just lets me have those GBS days and I do sleep. I am working full time again, so I have to plan my days, but just tell yourself and your wife to listen to what her body is telling her. Don’t listen to all those people who wonder why she isn’t well yet. It takes time and patience – but you have it, and her. God gives us blessings in most unusal ways.

Hey these are very interesting posts.

Hi Lauren

So good to hear that you are feeling better and are so positive, keep it up!:)

To attach a picture you have to post it somewhere, I use photobucket.com

Once you have it posted go to it and copy the url..then set yourself up to post on the gbs site, press the insert image button on the toolbar, a window will open for you to paste the url into, presto! You’re done

here’s a pic of my guys trying to jam

stay cool:cool:

[IMG]http://i1198.photobucket.com/albums/aa444/northernguitarguy/IMGP0331.jpg[/IMG]