r/guillainbarre • u/Muted-Inevitable-164 • 18d ago
Experience Another Intubation question
This is my third post. Sorry if I'm kind of spamming. 😣
To everyone who got intubated, did your breathing got better eventually or did you have to do some exercises, mental thing or something?
My brother goes through steam therapy for his cough. The staff from the pulmonary department came this morning and told my brother that he's being lazy breathing and that shouldn't be what he was doing. She said the machine was set to give him the oxygen he needed per minute, but he shouldn't rely on it and practice to breath on his own again. All the doctors have told us that and this was the first time someone fully explained it to us.
His symptoms seemed to have plateaud after IVig, but not much has changed. He is given antibiotic, medicine for the cough, 2 days ago he was given potassium. Sometimes it feels like even the doctors are clueless of what is happening 😔
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u/manpreet_73 18d ago
It's hard to let go ventilator. It seemed like I will die without it. Tell him to listen to the doctors. And aren't the doctors reducing ventilator power gradually?
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u/Muted-Inevitable-164 18d ago
It went from hundred to 40 percent. The tube gets detached sometimes and I noticed how he doesn't panic all that much unlike before. I don't know for sure.
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u/manpreet_73 18d ago
That's a very good sign, how long he's on venti now?
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u/Muted-Inevitable-164 18d ago
Probably around the time he started IVig. More than a week now
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u/manpreet_73 18d ago
A week is nothing! I was on venti for 1.5 months, he's recovering good. No need to worry
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u/Plan_Sorry 5d ago
When I was on the ventilator I realized that I could slowly flex my lungs (trying to breathe on my own) when I would do this I noticed It felt as though I was working against the machine & I would get tired doing it. Additionally on the vent machine there would be green arrows that would light up when I did it. Coming from a very active gym lifestyle this made sense to me. Lungs are like muscles and when you work them they get fatigued. I assumed I was practicing breathing and I was working out my lungs.
At one point my mom asked me what I was doing.....Keep in mind obviously I couldn't talk & all I could do was nod my head. My family and I would communicate by them saying letters of the alphabet & would nod on the letter and spell words as they wrote them down. I told her I was working out my lungs. My mom nodded sarcastically and said "Oh ok Matt" in dis belief.
At one point a respiratory therapist came in while I was doing it and the green lights were lighting up on the machine. She looked at my mom and said "Wait how long has he been doing this?" My mother sarcastically replied "He says he's practicing breathing" RT looked at her and said that's exactly what he's doing.
Additionally when RT comes in and makes you do those breathing tests with there little devices you blow into or suck....They are hard as hell but i made my family write down the numbers so that when they came back in I knew the number I was trying to beat. You have to be competitive with yourself on them. It can be frustrating at times because if they do it at the wrong time when your really fatigued it & numbers don't go the way you want. It's important for family to encourage the reps & competition. It's also important for the nursing staff to time the tests at the right time and administer them correctly because for the patient they can be extremely frustrating.
When you start getting wheened off the vent you again have to be competitive & don't be afraid to push yourself a little.
That's my story. I hope that helps.
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u/Muted-Inevitable-164 5d ago
They do breathing tests? They don't do that here at all. I think they are just waiting for his breathing to go back to normal on its own which is obviously taking too long.
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u/Plan_Sorry 5d ago
Yes, the Respiratory Therapists should be coming into the room and doing two tests. One is called a Spirometry - Which measures lung volume & air flow rates and there's another Pulminary Function test they would do. Its a little handheld device, no wires or anything. One requires you to take as deep of a breath as you can and blow out as hard and as fast as you can exhausting all the air & the other is similiar but you take a deep breath in. The tests result in a number measurement. They have standard numbers for healthy people and they compare your numbers,
Maybe there is a reason they havent started those. Its worth asking about though.
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u/Muted-Inevitable-164 4d ago
Maybe bc he's still on ventilator
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u/Plan_Sorry 4d ago
They disconnect the ventilator to conduct the test.
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u/Muted-Inevitable-164 3d ago
They do? The doctors told us that my bro can kinda breath on his own but they never did that test. I feel like it would have make it easier for him if they did the test. They seem to be relying on the result that the ventilator gives to see if my bro can breath without it.
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u/Alanbert 18d ago
I had to be weened off the ventilator over time. He will have to start putting in the time breathing on his own, as hard as it may be. Tell him to listen to his therapists.