Seeking help Extubating a 10 yr. old boy with SMA Type 2

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Diagnosis: SMA 2
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Seeking help Extubating a 10 yr. old boy with SMA Type 2

Postby Thankful » Mon Feb 29, 2016 1:26 am

Our 10 year old is currently intubated in the PICU because of RSV.
He has never had to go to the hospital as we have always managed his illnesses with the use of MIE & The Vest at home.
He has never been on BiPap yet after this event and learning from the BreatheNVS website we will be putting a better program in place at home and that will hopefully include IPPV or at the least BiPap with the lowest EPAP settings.
He has been intubated for 12 days now and his X-rays of the lungs are getting clear.
The ventilator is set at :
28 BPM
16 cmH20 Inspiratory press.
8 cmH20 PEEP

At these settings and awake he has readings of :
entCO2-----38-58 ( most of the awake hours are 45-58)

At these settings and asleep he has readings of :
entCO2-----30-45 cmH20

Any thoughts on the Vent settings ?
They look to be to high in the BPM and the Inspir. Press seems too low and PEEP seems too high.

I asked the Dr. here if we could start to lower the PEEP and raise the Insp. Press. & get closer to an 18 cmH20 difference between PEEP & Insp. Press. with hopes of lowering his etCO2.
Needless to say, he did not like this idea & instead is considering giving another diuretic ( he was already given 1 dose of Diamox and that did nothing) to try to get rid of the excess CO2.

We are in a hospital with Dr.'s that are listening to the care and extubation protocols of BreathNVS yet they are reluctant to put them all in place.
We are very happy that a few RT's at this hospital are familiar with using MIE while intubated as that has proven to be crucial.

We normally use MIE settings at home, using a mask, of +40 to 55 for 2 sec then -40 to 55 for 2 sec & pause for 2 sec.
While Intubated at the PICU we are using +30 for 1.5 sec then -30 for 1.5 sec & pause for 1.5 sec.

He suffered a minor pneumothorax during our stay at a previous hospitals PICU. This may have happened because the staff there did not know how to use the MIE while intubated and neither did we.
The chest tube was removed 3 days ago.
Knowing this information about the pneumothorax
Are these settings sufficient ?

He is still on Fentanyl & Versed for pain.
The Intubation tube is wearing away at his teeth and roof of his mouth and he is ready to get the tube out.

Any thoughts on how to get out of this situation ?

Any help is very greatly appreciated

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Re: Seeking help Extubating a 10 yr. old boy with SMA Type 2

Postby bachjr » Wed Mar 02, 2016 6:26 pm

You can not turn off the EPAP when using BiPAP which is why we don't use it. An active circuit on a portable ventilator should be used. Pneumos do not occur because of the vent or CoughAssist. I strongly recommend that tracheotomy be refused; he will never never need one; but needs to be extubated to CNVS and MIE as you have read about in I know the docs do not want to learn, so have them transfer the boy to us.
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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