From tracheostomy to BiPAP

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aichatou
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Diagnosis: Nemaline Rod Myopathy
Diagnosed: 2014
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From tracheostomy to BiPAP

Postby aichatou » Thu Jul 14, 2016 12:35 am

Hello,

My son was born with Nemaline Rod Myopathy with the ACTA 1 gene affected. He is 2 years old and was trached at 5 months old. My husband and I are considering to have the trach tube removed as soon as possible before his trachea gets damaged. We asked our pulmonary doctor and he confirmed that it is possible but a lot of things are to consider, like complications, suctioning of the chest area... As of now, he is back to room temperature (was on 2l of oxygen baseline for the past 9 months). They just changed his Tidal volume from 75 to 90 and decreased his respiratory rate from 26 to 18 which he is tolerating very well.

My son is supposed to have a procedure for bronchoscopy soon and his tracheostomy tube size enlarged. His pulmonologist told me that if we are planning on switching him to Bipap, it is better not to touch his actual tube so that we do not increase the size of the stoma which will make it more difficult. So far ENT doctors at the hospital said that they were not going to do it. Is there a facility near Texas where we can have him transferred and have the trach tube removed?

Thanks!

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bachjr
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Re: From tracheostomy to BiPAP

Postby bachjr » Thu Jul 14, 2016 4:08 pm

1. If the trach is not too badly damaged now, it probably won't be later but this is not sure.
2. The tidal volume from 75 to 90 ml is not adequate. The CO2 and O2 sat MUST be normal by using the ventilator and CoughAssist correctly. If they ARE being used correctly, then there would be absolutely no need for O2 delivery and his respiratory would be normal which about 18 is.
3. He should not need bronchoscopy if the CoughAssist were being used via the tube correctly.
4. If he is using trach ventilation day and night and his vital capacity is less than 200 ml, then he would have to be admitted to a hospital, intubated, the tube removed, and extubated to NVS (see www.breatheNVS.com).
5. Increasing the size of the stoma does not make it more difficult to closure once the tube is out.
6. No ENT doctors would take the tube out. They have no idea how to use NVS/MIE instead of trach use.
John R. Bach MD
Medical Director, VentilaMed BreatheNVS
Medical Director, Center for Ventilator Management Alternatives
Professor of Physical Medicine and Rehabilitation, Professor of Neurology, Rutgers New Jersey Medical School

aichatou
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Posts: 2
Joined: Thu Jul 14, 2016 12:03 am
Diagnosis: Nemaline Rod Myopathy
Diagnosed: 2014
City: Houston
State or Province: Texas
Country: USA

Re: From tracheostomy to BiPAP

Postby aichatou » Thu Jul 14, 2016 8:37 pm

Dear Dr Bach,

-My son is 25lbs now so that is why i think that they increased the tidal volume from 75 to 90.
-After using the CoughAssist he is usually completely cleared up and he is not requiring any O2.
-When you say that "If he is using trach ventilation day and night and his vital capacity is less than 200 ml, then he would have to be admitted to a hospital, intubated, the tube removed, and extubated to NVS" does it mean that it is not normal? And how can we measure the vital capacity since he is with trach and vent 24/7?
-Is there someone that you know here in Texas that is willing to perform the change to NVS for him? If not, what is the procedure to get him transferred to your hospital for it?
I read everything that is said on the websites and even saw the pulmonologists that are seeing my son at Texas Children's hospital on the list of Centers for Noninvasive Respiratory Management but it does not look like they want to do the procedure after we talked about it.
Thank you

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bachjr
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Re: From tracheostomy to BiPAP

Postby bachjr » Mon Jul 18, 2016 7:35 pm

aichatou wrote:Dear Dr Bach,

-My son is 25lbs now so that is why i think that they increased the tidal volume from 75 to 90.
-After using the CoughAssist he is usually completely cleared up and he is not requiring any O2.
-When you say that "If he is using trach ventilation day and night and his vital capacity is less than 200 ml, then he would have to be admitted to a hospital, intubated, the tube removed, and extubated to NVS" does it mean that it is not normal? And how can we measure the vital capacity since he is with trach and vent 24/7?
-Is there someone that you know here in Texas that is willing to perform the change to NVS for him? If not, what is the procedure to get him transferred to your hospital for it?
I read everything that is said on the websites and even saw the pulmonologists that are seeing my son at Texas Children's hospital on the list of Centers for Noninvasive Respiratory Management but it does not look like they want to do the procedure after we talked about it.
Thank you


The O2 sat must be NORMAL, not simply that he "does not require O2.
Yes, it is not normal because once kids have trachs I usually leave them in until they are old enough to understand and cooperate to get them out.
To get him transferred, his docs and I and you need to get your insurance to pay for it. Unfortunately, there are no such centers for children in Texas that will extubate or take the trach tube out of unweanable patients.
John R. Bach MD
Medical Director, VentilaMed BreatheNVS
Medical Director, Center for Ventilator Management Alternatives
Professor of Physical Medicine and Rehabilitation, Professor of Neurology, Rutgers New Jersey Medical School


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