How do you know when weaning off vent?
AnonymousAugust 16, 2006 at 8:14 am
My husband John is now in his 11th. week of total paralysis. He has been in three different hospitals because the insurance company can’t seem to agree with anyone about what they will pay. The last time he was moved he had cardiac arrest and had to have a pacemaker installed. He is 60 years old and was in excellent health before the GB set in on June 4, 2006. He has had a slight recovery of motion – tiny bit of movement in his head and eyelids are now under his own control. He is now able to slightly open and close his mouth which before just hung open. Everything else still won’t move. A few days ago John complained that his vent wasn’t working properly – that its rhythm was off. The respiratory person came in and said that it was set for 13 breaths and it had registered 15 breaths because John was taking two breaths on his own. Is John starting to show signs of his breathing muscles coming back? Another GB patient who has now recovered who JOhn’s neurologist says seems to be a similar severe case started weaning off the vent at three months from onset of the GB. Have any of you had experience with being paralyzed for months and then being able to get off the vent? Is there any way to predict what to expect, and how do you know the breathing muscles are coming back?
The last time I posted I asked for advice about continuing plasmaphoresis at this late date. I want to thank those of you who advised me to get a second opinion and not to allow it if I didn’t believe it was right based on my research in medical journals. I did get a second opinion and like the new neurologist much better. He is giving John IVIG treatments on a once a week, then once a month schedule. I hope this is the right thing to do. After the first one, John was terribly swollen up with water retension – like marshmallow in his hands and legs. He is back to normal after two days of diuretics and his movement does seem to be improving very very slowly. Do any of you have anything to say about IVIG treatments after the come back has begun?
Carolyn Baker – a gb wife
AnonymousAugust 16, 2006 at 2:35 pm
I was on the vent for about 6 weeks, but it was so long ago I cant really remember exactly how they knew I was ready to come off. Once again, my forum friends will probably know better than me, but I think it had something to do with me talking the odd breath by myself on the ventilator. I think, and I dont know the terminology, but they set the vent to either fewer breaths, or less oxygen, and then saw how I coped. I think that during this time they also took blood oxygen levels to see how much oxygen I was getting. Maybe when I am able to speak to my mom again she may be able to think back 20 years, I think her memory is far better than mine 😉 .
I only had one series of plasmapharesis, so unfortunately I dont know much about IVIG.
Please keep us posted, we would love to hear when John is able to breath by himself.
AnonymousAugust 16, 2006 at 5:46 pm
My sister was dx in November ’05 and placed on a ventilator on the 3 rd day. She was in ICU for 2 weeks and was transferred to an actue hospital to be weined off the vent. They slowly began reducing the required breaths per minute and encouraged the breathing over. It took several weeks, but when she left the actue hospital after 5 weeks and was transferred to rehab hospital she was on oxygen only.
Felicia was, also, paralyzed to her eyebrows. It has been a slow process, but things are continuing to return. She is 8 1/2 months into GBS and is has had return to some degree everywhere.
Good luck and stay strong. It is true that GBS stands for getting better slowly.
AnonymousAugust 16, 2006 at 6:16 pm
Everyone’s case is different and it depends on the damage that has been done. Some people here were on Vents for months maybe a year. The Drs will try when they think the patient is ready and they will monitor him very carefully to see if those muscles are working properly for him to breathe on his own. I know this is so hard for you but in time John will be able to breathe on his own. Always remember:
[B]GBS stands for “Get Better Slowly”[/B] 🙂
AnonymousAugust 20, 2006 at 6:04 am
Have any of you had experience with being paralyzed for months and then being able to get off the vent? [COLOR=”Red”]I was completely paralysed and on a vent for 79 days. I was succesfully weaned from the vent and had the trach removed about 2 weeks later[/COLOR]
Is there any way to predict what to expect,[COLOR=”red”]You can expect it to be a slow process. If it isn’t then they are pushing to hard. Each case is different and each person recovers in their own time.[/COLOR] and how do you know the breathing muscles are coming back?[COLOR=”red”]The vent machine monitors how many breaths that it is giving to the patient. It also monitors how many breaths the patient is taking on their own. Slowly they will lower the number of breaths the machine gives in order to allow the body to start doing the work on its own. In time the patient will be doing more of the work than the machine. Then they will do little tests to see if the patient can handle breathing completely on their own. First it starts with just a few minutes off the vent. Then it will happen at longer intervals. The whole time they will be monitoring the patients vital signs, including their oxygen saturation levels. As long as everything looks good they will continue this process until the machine is no longer needed. [/COLOR]
AnonymousAugust 20, 2006 at 1:57 pm
A good excersice to strengthen the lungs that I discovered at month 4 on the vent, is to try to hold your breath long enough to set off the vent machine alarm. Once you get that alarm to squeek briefly, then try to see how long you can get the alarm to stay on. Sounds kind of funny, but it worked for me. Started as a desperate move by me to get my call light answered that was being ignored for hours. After about 2 weeks of trying, I was setting that sucker off for 30 seconds getting everyone’s attention who were standing around in the hallways. Shortly there after, all signs improved a great deal and upward I went. My very first time weaning off the vent, where they try an hour without it, or so, I went 4 hours. Freaked the RT out, but I felt ok. As I went longer and longer off it over time, and started the sleep time without it, and just the oxygen tubes in the nose, I woke up one morning and my oxygen tubes were off to the side and not even close to my nose. Must have tossed and turned my head a bit much that night. Knowing the care I was recieving on night shifts, I said to myself, I wonder how long this was dislodged from my nose? Nurses rarely checked on me during night shifts, unless my vent alarm went off(lol). So, I new, before any doctor did, that I can breath on my own, and the very next day, on my insistence, I did my first 24 hour stint without anything helping.
AnonymousNovember 4, 2006 at 12:16 am
Hi Carolyn, I am also a GB wife. My husband Bob who was 45 when he had a quick and severe onset of GBS(4 1/2 yrs. ago). He was on a ventalator for 8 mths. and they tryed to start weining him to soon. The muscles can’t still be paralized or it is only harder on the patient. Bob is breathing well on his own now but you have be patient. Once the lungs start working again they should get him to blow into an instrument that indicates how much strengh he has, when that gets to a certain level he can be taken off slowly, Bob had to have oxygen for a few months. It is such a slow recovery but have faith.
AnonymousNovember 5, 2006 at 6:23 am
I was only on the vent for 3 weeks. I was in a coma for the first 5 days but as far as i know i was breathing on my own not long after as I can remember them saying the vent was only there as a support and would kick in if i didnt take a breath within a certain period. I had a trachy put in after 2 weeks as they said that was the only way to wean me off the vent (also a lot more pleasant than having a tube down your throat) I dont think they like to keep people intubated long term. Anyway, once i had the trachy in they started to wean me off the vent – 1 hour off, 2 hours on then the next day 1 hout off, 1 hour on and if i tolerated that then they kept increasing the period of time i was off the vent. During the time i was off the vent i had a t-piece which is basically atube connected to the trachy which gives you humidified oxygen which makes it easier to breathe and mositens secretions etc. I think they decided to start weaning me once i had the tube out because i wasnt relying on the vent. I can relate to your husband saying the rhythm was off. They changed my vent at one stage to an older model as someone came in who needed it more than i did. As the vent wasnt actually breathing for me (unless i held my breath and made the alarms go off lol) they didnt think i would notice but i did. It felt like i had to work so much harder to breathe and that i was working the vent! Once i felt what it was like being off the vent i hated going back on it, i felt so much better breathing on my own but they kept me on it for a while at night in case i forgot to breathe while i was asleep.
Anyway, while i wasnt paralysed as long as your husband i was totally paralysed including eyes and mouth. I was lucky the ivig worked straight away and i started to recover quickly. I ended up having the trachy for 3 weeks due to an infection but otherwise i was breathing on my own about a week after the trachy was done. And i have no long term side effects as a result of the vent and trachy – apart from the scar – so there is defginitely hope
AnonymousNovember 6, 2006 at 2:21 am
My father is currently in his 13th week of being on the vent (tracheotomy now) and he too is very much like your husband in that he has only a slight bit of movement in his head (side to side) and can now sort of bring his chin up so that it doesn’t hang slack as you mentioned your husbands did. My father too is completely paralyzed from basically his chin down and he too was in perfect health before GBS knocked him down. I am so sorry and I can relate so well to the heartbreak as you watch the muscles waste away to nothing right in front of your eyes. My fathers doctors tell us it will be weeks before he is ready to start weaning off his vent. He does not have the strength or muscle capacity to breath on his own.
My heart goes out to you and your husband. The gang here has given me so much strength. If not for this forum to come and read and vent I would have no idea where to turn for support.
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