Vent Weaning with RT - Brain Trauma vs SCI

[Joey_SF]

I wonder if anyone has tried this.

I have been told by a pulmonologist that vent weaning at home is usually not done and he's never heard of it -- and he suggests that I try to get my Dad into an in-patient program.

However, my Dad (C3-C4 incomplete, currently at home) may not be able to get into a program. I'm still working on it, but since it's almost a year (Sept 30th) since my Dad's injury -- I don't want to wait. In Jan, he did a fluoroscopy (at the urging of a kind nurse who was a former doctor) which showed that his right diaphragm was moving, but the left was little or none -- no fluoroscopy had been done since. In July, it seems that he could "trigger his own breaths" for 15-20 minutes and according to the RT, it "looked good" when I asked what the little graph pics meant.

I've spoken to an RT who has experience weaning Brain Trauma patients off the vent. He is willing to help my Dad at home -- the rules seem to be that he must work with a Doctor so, I'll intro him to the Doctor.

He also mentioned exercises to improve my Dad's breathing.

Q: Would the weaning process be similar for brain trauma vs. SCI?

Q: Has anyone gotten the help of an RT for home? This will be private pay.

Q: I want my Dad to do a fluoroscopy to see if my Dad's diaphragms are moving. I realize that even if both were moving, he still may not be able to wean. But, my guess that if both are not, he won't wean.

However, the doc wonders if it's necessary and says that some people can breathe using their accessory muscles, so it doesn't necessarily depend on diaphragmatic movement.

The doc asked why my Dad would want to wean since hypothetically, if my Dad could conceivably have more problems with weak breathing. However, even if my Dad could get off the vent for a few hours, safely, it seems to be a good thing.

Any thoughts? experience?

[SCI-Nurse]

It is not the same for TBI vs. SCI.

I still think you need to try (again) to go to Santa Clara Valley with your dad. They have the experience and expertise he needs right now. I have not seen many people with SCI who can breathe more than a very short period with only their accessory muscles. The diaphragm does most of the work of breathing, and without it, that is not usually sufficient to wean. In addition, use of accessory muscles alone is VERY fatiguing. Even if he just had a 1-2 week stay at SCVMC on the SCI rehab unit to study his weaning potential better, and help you set up a continued weaning program at home, it would be much better than trying to do it with a team that lacks this expertise and experience....and safer as well.

(KLD)

[Joey_SF]

Hi KLD,

Would you recommend a fluoroscopy or ultrasound or something else to determine if both diaphragms are moving?

And, if both are not moving now almost one year after his injury -- would we be wise to give up since I've been told that no one can breathe with just one diaphragm? My Dad's neck is still swollen (it's better, but still swollen).

Re Santa Clara, the Director who had rejected my Dad last year didn't suggest a re-application. Other SC employees recommended that I try, but the intake person told me that the approval must come from this Director. A kind Doctor who claims to be well-acquainted with the Director told me that he asked the Director for feedback on how to help my Dad's vent weaning situation and even told him, "money is no object" -- the Director recommended John Muir for vent weaning.

I was quite sad (and the kind Doctor was disappointed) that the Director didn't suggest a re-application. So, I hesitate to re-apply.

Also, the intake person told me that my Dad's insurance company has never and will never have a contract with SC. She claimed that the Director had reviewed my Dad's application only as a courtesy. Thus, I wonder if switching to Medicare would help...

Have you heard anything good, bad, or otherwise about JM? A friend's doctor who works at JM offered to speak to vent weaning unit boss, but I'm still waiting... I'll call the boss next week if I don't hear... I know nothing about the healthcare profession or insurance (I'm a bit of an academic, and I've never needed special intros) -- at this point, I'm willing to beg on hands and knees.

Ohhh... I spoke to a PT, formerly with Craig's. He suggested a reapplication with the point being that with the statistics strongly against a person of my Dad's age, he's still alive after one year so he may be worth rehab...

I'd appreciate your kind advice.

[SCI-Nurse]

John Muir is not a SCI center, nor are they expert at SCI vent weaning. I would guess that their vent weaning program would be similar to Kindred's...aimed at elderly people who have been ventilated for pneumonia, or COPD and then had a difficult time or were unable to wean in an acute care ICU.

I would appeal the decision of both the insurance company and SCVMC based on age-discrimination. SCVMC is clearly and by far the best institution for both SCI care and SCI vent weaning in the region. Craig would be great too, but you would have to travel to Denver, of course.

I have seen young people who were able to be totally ventilator free with a cervical SCI and only a half a functioning diaphragm (hemi-diaphragm). It would be much more difficult with an elderly person.

(KLD)

[Joey_SF]

As always, thank you very much for the info.

1) Last night at the hospital -- I got the help of an RT to check my Dad's ability to trigger his own breath

a) we had to make sure that my Dad deliberately take a breath -- wierd thing, if we did not tell my Dad to take a breath, he would just let the machine breathe for him

I left after about 1.98 hr of his 'triggering his own breath' -- pressure setting 15, he breathed over 500 (up to 548) and only dipped under 300 about 3 times.

It was about 1:00 am in the morn -- the RT said that it was important that my Dad is awake when they do this.

I was a bit worried cuz the RT left the setting at PVS (sp?) and said he'd come back later so I don't know how long my Dad lasted... they mentioned that my Dad would be tired the next day.

b) Just wondering - are there any studies or statistics to show that some SCI folks have regained their vital capacity six months after injury? I've read of several SCI folks who regained or became stronger six months after their injury - but the pulmonologist hadn't really heard of this.

Would my Dad's ability to trigger his own breath for a few hours be a stronger indication of a possible weaning... versus just 15-20 minutes?

It seems that for Santa Clara, it's important in an application to write about "changes" -- and, I'm hoping that this is important.

c) My Dad's home vent is the PLV 102b which is the room air version of the last facility's vent, no peep and no pressure support.

At this facility, they told us the choice was eating/speaking or weaning... but they also said that if my Dad could wean, he could breathe over the vent. At about 4.5 months after his injury, they concluded that he could not wean.

[SCI-Nurse]

If he is disconnected from the ventilator and not told to breathe , does he breathe? He has to do both! Good that he can tgrigger a breathe but he has t have the automatic breathing also. But vent needs to be set low. Also work of breathing can be very hard and that is the difficulty in weaning also. What were his saturation levels?
We always wean 15 minutes three times a day then build up from there if everything okay. Called a slow wean to build up the muscles. Do only if vital capacity is good.
CWO

[Joey_SF]

Your approach seems more logical -- even for simple repetitive motion, I start at 2-3 min and build up.

Last nite, I checked -- my Dad could not last for five hours -- instead, only about two hours -- I noted that after about 1.75 hrs, he was tiring and dropping below 300 about 3 times.

Oxygen setting = 40 (since he still has pneumonia -- otherwise, he's on room air). O sats were 99 and 100.

We haven't tried the combo (a) disconnect him from the vent and (b) don't remind him to breathe. However, at home, if there's an accidental disconnect and the vent alarms (20 sec) and I make a mad dash to find the disconnection -- he's fine, no distress.

A recurring problem is the vent will go from 14-16 bpm to 35 bpm. I think that it's due to too much moisture accumulating in one of the tubes -- the vent supplier says that they've never known this to happen -- they claim that my Dad must have taken the breaths (I doubt this). The home health nurse also thought that my Dad was triggering 25 bpm at one point (she was changing his foley and thought this made him anxious). At times, if I shake out the moisture, it'll go back down to 14 bpm.

Re the breathing, have other SCI folks have luck with automatically remembering to breathe?

[JinJing]

Hi Joey_SF, my Mom's case (68) is no similar to yours but she has been on ICU with trachea, ventilator for 7 weeks now. She had mitral valve repair, reacted to Heparin (the worst type, very rare), Heparin-induced Thrombocytopenia (HIT), almost lost both her arms. docs suspects HIT started all the other complications that came. Am telling you we went through a lot, God must be with us. She survived the operation and the HIT. She had unsuccessful weanings (intubated for 6 times) and finally got a trache. She now has pigtails (both lungs), some infections and drug-related fever. With the trachea, still unsuccessful in weaning. We thought with the pigtail on she will improve with the weaning process. She could take(on CPAP mode) Fio2 of 28, pressure support of up to 8 (slept on it) then suddenly had breathing difficulties so it is now on FiO2 of 28, pressure support of 15. Seems like she really need the support and was ultimately confirmed by her diaphragm test that her diaphragm muscles are very weak. We will be transferring tom to a ward with the ventilator and was given 2 to 3 weeks to assess if she could ever be weaned off. Otherwise, she may have to go home with i don't know what kind of ventilator we can have for her as I live in the Philippines, i don't know what machine is available here for a home-setting ventilator. Unlike yours, our medical cards here has limitations (big difference from yours i assume. She gets 20% senior citizen discount though. Anyway, we don't want to give up as she was never in a coma, coherent (though she was restless when support is not enough). But, just like your Dad Mom seems to let the machine breath for her and worse, she wouldn't say if she already has difficulty in breathing.

I just want to say that I admire the kind of care and love you have for your Dad. I hope you find the best facility for him. I think that based on his FiO2, support and sats; he is weanable. Good luck ! God bless you & your Dad.

[Joey_SF]

Dear KLD and Others,

My Dad was readmitted to the hospital... sigh.

A family member insists that the 2-hour "triggering of his breath" did not mean anything.

So, today (I wasn't there) -- they tried to put my Dad on pressure support and it didn't work. The hospital doesn't want to try further and to focus on his current problem.

Could it be that there are days when it won't work?

Or, my Dad could trigger his own breath at the end of Sept and he still had pneumonia -- now, it's Nov... could he just be getting weaker?

I'd appreciate your or others' advice!




Hey JinJing,

Thanks for the good wishes -- and, I wish your Mom the best as well. She is lucky to have a loving supportive family.

[Scaper1]

Unfortunately, the muscles one can use to trigger vent breaths aren't necessarily enough to support independent breathing. I can trigger a breath with a slight nod, but it has nothing to do with my diaphragm.

[Joey_SF]

Hi Scaper1,

Oh gosh... when you trigger a breath, what is your average and highest tidal volumes? what is the pressure setting?

[Scaper1]

On my particular vent there's a sensitivity dial for the trigger mechanism, and mine is set to low, meaning even a slight movement will suffice to trigger an extra breath. My volume is set to 900.

[Joey_SF]

1) It seems that my Dad was sleeping when they tried to test him. It's wierd - the doctors did the test. The RTs tell me that my Dad needs to be awake.

So, the RTs tried again -- he could trigger his own breath for 3 hours and they wanted to keep my Dad going until he wiped out. My Dad was fine from their perspective -- but, I noted a drop in O and a lower heart rate. He was really tired the next day.

Is there a risk to just have my Dad keep going until he wipes out? Shouldn't it be done like exercising other muscles in the body after a long hiatus, start out slow and gradually increase?

I don't know the technicalities -- but I believe there's a particular mode called "pressure support" wherein he can breathe on his own (with pressure support) and his breath's tidal volume is measured. My Dad had settings at 15 and 10... highest tidal volume at 611 and 443 respectively. Also, you can set the lowest baseline such as 300 or 250, the machine will alarm and this will indicate that he's tired.

Is this right, SCI nurse?


2) KLD and others who may know - I'd appreciate your feedback.

I spoke with Santa Clara again. I asked if a switch to Medicare would help.

SC told me that Medicare will not pay for the vent weaning program because SC's program is unique in that it is a part of the ICU -- and, it is billed as such. Medicare will not pay for my Dad to transfer to the ICU.

SC rec that I try to get the HMO to do a contract -- but, this would be "incredibly rare." I guess that she looked it up -- cuz in a previous conversation, she told me "never."

I will call SC again because I don't understand why the HMO (which is a Medicare HMO) could pay for it but Medicare will not... there must be a way... can anyone think of one?

[JinJing]

Hi Joey_Sf..Just happy to say that Mommy is home !! a real miracle! we had our merriest Christmas thank God ! we just had her breath using her diaphragm (placing a book on her stomach) so she would know if it's moving, that she is breathing properly cause she didn't seem to know how to do it right, like she has forgotten all about it..(they say it happens cause they tend to rely on the machine breathing for them) it was a long journey ..she is now on rehab, can make short walks and appetite is slowly coming back..now her check ups say her mitral valve repair is holding up real well. We are monitoring her BP and heart rate..

I pray that a solution will come your way..God bless you & your Dad !!

[JinJing]

Let me just add..Mommy is sent home after 11 weeks in ICU (mitral valve repair, 1 vessel bypass, HIT reaction, 3 weeks intubated, 11 weeks of trache)..anything is possible. Praise God !!