Decannulation

Please use this forum for any general discussions or questions you have about noninvasive ventilatory support and mechanical insufflation-exsufflation (MIE).
Watkins
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Diagnosis: Muscular Dystrophy
City: Ledbetter
State or Province: Ky
Country: USA

Decannulation

Postby Watkins » Tue Dec 06, 2016 3:04 pm

This is kinda a long story but I will make it short as possible.

My wife is Holli, she is 38yrs old. 1st grade school teacher.

A little background info.
No medical problems other than high blood pressure. Her sister passed away in January from skull fracture leading to ARDS. Her dad passed away same month from stroke complications. Her brother has Muscular Dystrophy Spinal Ridgity. He has been using NIV for 20yrs after having respiratory distress due to retaining CO2 from sleaping with o2.

Holli has never had any problema her whole life. She began to experience lots of stress due to sister and dad passing as well as home remodel going on and school starting back.
She started not sleeping good at night in August this year. She would fall asleep during the day and say crazy stuff.
Eventually after that going on for a couple weeks, we went over to her brothers home and she was falling asleep and talking crazy again. We went to the ER that day 8-14-16. She had co2 of 150, kidneys shutting down, so they intubated her.
The intubation got her co2 down and they extubated her two days later. She did very well doing bipap at night. They then had to do a sleep study to qualify her to get a bipap for home. During the sleep study of no ventilation and extra o2 her co2 went back up and she went back to ICU.
They used high setting NIV to get it back down from 120.
The neurologist thought she had Myostemia Gravis so sent her to Vanderbilt Hospital in Nashville Tn.
They intubated her again soon after arrival thinking her co2 of around 70 was too high although it was actually ok for her.
During this they did muscle biopsy with inconclusive results.
Vanderbilt finally extubated her after about 10 days. She was put on Trilogy machine by mask. The next day the Dr pulled mask off and her o2 dipped down low so she said she needed trach. They had been pushing trach since we got there and we kept refusing.
Finally we figured trach was only way to get back home. They made us think it would be easy to get it out.
Come to find out Holli had a lower lung collapse causing the low o2. But they didnt find that out until after the trach surgery.

She got the trach on 9-2-16.

She has been doing great recently. Requires no suctioning. Very independant. Wants to go back to work soon. Keeps trach capped all day everyday other than night ventilation for the co2 retention. Does whatever she wants basically. No mobility assistance.

They did genetic testing at Vanderbilt on what Muscular Dystrophy she has if she even has any. Still trying to get results of that test back.

The Pulmonologist is very concerned about decannulating her due to the unknown cause of her getting down in first place. He claims he doesnt have much experience wity her condition.
He is sending us to ENT who says she may not be able to get it out because they dont want her to go into distress.
We go see Nueologist thursday to see if her muscle weakness is progressing.
Then back to Pulmonoligist Monday.

She really wants the trach out and is worried they will not want to decannulate her.
Her brother and I have read lots of stuff on the internet, mostly Dr Bach's stuff, that shows otherwise.

Hoping they can decannulate her and then go to NIV during night.

Any opinions?

Watkins
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Posts: 2
Joined: Tue Dec 06, 2016 2:40 pm
Diagnosis: Muscular Dystrophy
City: Ledbetter
State or Province: Ky
Country: USA

Re: Decannulation

Postby Watkins » Tue Dec 27, 2016 1:01 pm

Just an update.

Holli was successully decannulated on 12-16-16. We finally found a willing ENT Dr that would take the trach out. She has been doing amazing on nighttime niv.

Thank you to Dr Bach. He is a true pioneer in this field and his research and knowledge has helped us so much on our journey to be trach free.

Hopefully hospitals and clinics will learn a thing or two from him and look for other niv options before they start traching people.

earlthenut
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Diagnosis: SMA
Diagnosed: 1968
City: University City
State or Province: Missouri
Country: United States

Re: Decannulation

Postby earlthenut » Thu Sep 07, 2017 3:18 pm

Thanks for the words of hope. I have SMA, age 54 and was told I would never get off the trach after ending up in critical care hospital with many of the same symptoms as your wife. This was two years ago. After a long process, finally, I was, last week, decannulated.I am currently off all breathing support aand have never felt better. I hope more people learn from Dr. Bach! Trach can and will be successfully removed! If you want it,And are willing to work for it.

kalesb
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Re: Decannulation

Postby kalesb » Fri Jun 22, 2018 10:23 am

Watkins,

What kind of nighttime niv is your wife using?


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