NEED HELP with ventilator weaning…..

    • Anonymous
      October 13, 2010 at 5:22 pm

      My aunt is 84, has had GBS for 11 weeks. Her biggest battle right now is weaning from the ventilator. She has been on trach collar trials about 3 weeks. Her longest on the t collar so far – 14 hours. Respiratory therapists differ a little in what they tell her. When she feels like she cannot breathe, they say her oxygen levels are good, etc. and they push her to go longer. She tries so hard…but gets very distressed and anxious, until finally they put her back on ventilator.

      She was completely paralyzed at first, but is slowly regaining movement. Eyes open, moves her head side to side, shoulders a lot, has small movement of fingers, and quite a bit in one foot. She has the same positive attitude she has displayed her whole life, and works hard at PT and OT. But she is struggling SO much with the ventilator weaning.

      The RTs pretty much all say that when she goes 11 or 12 hours one day on the t collar, then less the next, that it sets her back. They say her diaphragm muscles, like any muscles, must be stretched to get stronger.

      All she knows is when she feels she cannot breathe, it is awful. She mouths help me, help me over and over and the family is in anguish right along with her. She is very intelligent and aware of what is going on. She questions the RT asking what she is doing wrong, and like that. (She mouths the words, but is so good at it and persistent until we can usually figure out what she is saying.)

      One RT said she is breathing out of sync with the machine, maybe from anxiety, yet they don’t say how she can get IN sync with the vent. Just relax is all I’ve heard.

      Another RT said she is breathing too fast and too shallow, tiring her and making her carbon dioxide levels too high. She was told to take deep, slow breaths, from her abdomen.

      Another told her don’t try to breathe through your nose and mouth at all, that the air is not coming through there when you are on ventilator, that she should just relax and let the vent do its job.

      O.K. you get the idea. We are all frustrated, as is she. I think she had a touch of pneumonia at first, got over that, but may still have some fluid around her lungs. I wonder if that can make the weaning take longer. And her age is a factor I would think. But she is such a fighter and I know she is doing the best she can. Insurance of course says she has to be off ventilator by a certain time…I don’t understand it all, but she cannot move to next step, a rehab, until she is completely breathing on her own.

      Anyone out there who can speak of your experience that might be helpful? Thanks so much!!

    • Anonymous
      October 13, 2010 at 7:30 pm

      I remember that feeling VERY well! It was AWEFUL!! The only thing I can suggest is to tell her that during the weaning process, she WILL feel tired and scared, like there is a vise tightening around her chest as she gets tired. No one told me this during the weaning process. I was told they were doing breathing tests. That’s it. Try to remind her that it will take some time. Try to remember to breathe slow and even. I don’t think it matters if she breathes through her nose or her mouth as long as the breaths are slow and even. Tell her you understand that it is frustrating, especially when you are getting different answers from different RT’s.

      She WILL get off the vent. It will just take some time. Tell her she is doing wonderful!

      God bless,
      Tonya Correll

    • October 13, 2010 at 8:48 pm

      With me, I think the thoughts of not being able to breath will be with me till I die. There were lots of times that I thought I wasn’t getting enough oxygen when on the ventilator. There were a couple of times that I would hold my breath which would set off the alarm on the ventilator machine so that I would get help from a tech, like being turned, etc. I remember being completely parralized. so that by not being able to speak, or move any part of the body to activate the call button, that you try to come up with anything to get someones attention. I too was having a bout of pneumonia prior to getting GBS, however I wasn’t aware of it, and once the fluids were pumped out of one lung, it helped a lot. They wondered why I was using 80% oxygen & found the fluid in the lungs. I also had trouble getting in sync with the machine.

    • Anonymous
      October 13, 2010 at 11:47 pm

      Thank you so much Tonya and Joe. Your messages really help. No one can describe what GBS is like as well as someone who had it. My aunt has oxygen levels at 90% and 100%, so that is good…except she still feels like she cannot breathe at times.

      I heard encouraging news from my cousin tonight, that her mother had a good day, and that one doctor said she was making better progress than any GBS patient she had ever had. My aunt was even able to “stand”… held up by some device. They say this helps strengthen her chest muscles even.

      The recovery process has its ups and downs of course. We are a family of strong faith, and feel God’s presence every day.

    • Anonymous
      October 15, 2010 at 2:40 am

      Dear Pat,

      Being able to breathe by myself occupied just about all my thoughts until I had the tube removed. I was on a ventilator for 9 weeks with many ups and downs, like the others have said. I had all the same frustrations and many times when I wasn’t able to breathe properly (like when my tube was blocked by secretions). But I was helped lots by a speech therapist who one day looked at me and told me I was not breathing properly and reminded me to draw in the air deeply and smoothly and to exhale smoothly until all out. I was breathing too shallow, as one tends to do when one is worrying. The therapist also confirmed that breathing from different positions is helpful to strengthen the diaphragm muscles, in sitting up position for example. She also did some limited breathing exercises with me which involved very slight pressure on the chest while breathing and very few repetitions at the beginning. I don’t know what is right in your Aunt’s case, but just to say that there are people who can help.

      Another thought is that with the ventilator one can feel and hear the rush of the air and it is very comforting. When one tries oxygen masks or other things just after, it naturally feels as if you are not breathing properly because the sound and feel is not there. Finally, a thing to watch out for if she stays much longer is her ears. In my hospital stay, we all forgot to clean my ears out and after awhile they became totally clogged and I could not hear myself breathing even with a ventilator.

    • Anonymous
      October 15, 2010 at 9:13 am

      Thanks so much for your post Frank. My aunt did have her ears cleaned out once by ENT, but I didn’t realize that was from the ventilator.

      I have witnessed PT, OT, and RT working with her, but happened to never be there when the Speech Therapist came. So I did not realize what they do with her. Maybe the ST has been or will be able to help her.

      I appreciate your post, and will forward it on to my cousins and her other caregivers.


    • October 18, 2010 at 11:37 pm

      I remember my speech therapist tried her best to get me to talk with the trache, but to no avail, as I would get so short of breath, that she would remove what ever apparatus it was that she inserted into the tubing, when I started crying. Eventually, they found out that one of the trache pieces was the wrong size, like too small, but by the time that it was discovered, I was far enough along that the trache was removed. I don’t know which was the greatest feeling, being able to breath on my own again or being able to speak again.

    • Anonymous
      October 18, 2010 at 11:52 pm

      Thanks Joe, that is so interesting. I am learning a lot, and it is great to hear from those who have experienced all these ups and downs.

      The latest with my aunt is that she went 40 hours on the t collar, and we thought it was a real breakthrough. But then, a couple of days later, she had a bad episode less than 30 minutes after being put on t collar. She got real hot and red in the face, oxygen levels dropped, HR went way down. All the alarms went off, and they rushed in and put her back on ventilator. We don’t know what happened. My cousin was trying to get consultation with her doctors to see what they could tell him.

      Anyone out there experience this?? It seems like a step backward….after things were going so well.

    • Anonymous
      October 21, 2010 at 12:20 pm

      Dear Pat,

      I had several relapses myself while trying to wean off the ventilator. Many things can trigger it and it doesn’t mean a real relapse. Once, I just started coughing nonstop from some sleep medication they had given me. The coughing was not audible to others so they didn’t really know what was happening. However, the next day I was able to get back to the weaning process. I had all sorts of problems with air flow through the tube. There was a fitting issue as Joe had. Plus, I had secretions collecting on the inflated portion of the tube that would move down and block the breathing passage. So it could be many things that create these setbacks and many can be just temporary. While all of these situations are very serious to be dealt with immediately, they don’t mean that the weaning process has to be started from the beginning again.


    • Anonymous
      October 23, 2010 at 7:46 pm

      Thanks a lot Frank. My aunt seems to be back on track now. Not sure what happened, but she went 60 hours on the t collar since that one incident, so maybe she is over the hump now.

      I really appreciate your post. It helps so much to hear from someone who has “been there, done that” so to speak. I guess GBS is a roller coaster, and we just have to ride it out. We are thankful that my aunt continues to be in good spirits. She has a lot of family and friends praying for her, that’s for sure.

      God bless each of you for your encouraging messages.