ICU with respiratory problems

Please use this community for general discussions about Duchenne Muscular Dystrophy (DMD).
User avatar
curiousgeorge
Level II Member
Level II Member
Posts: 66
Joined: Mon Nov 23, 2015 4:06 pm
City: Newark
State or Province: NJ
Country: USA

ICU with respiratory problems

Postby curiousgeorge » Mon Jun 06, 2016 7:57 pm

I'm writing to you on behalf of my son with DMD. He is currently in ICU for respiratory problems. While here, he lost what little ability to eat that he had. We are now faced with the decision between a nasal feeding tube & a belly feeding tube. They will have to use general anesthesia if we opt for the belly tube. His pulmonary function is less than 20%, which means a trach & ventilator for good. I need advice. Thank you.

(Asked by a parent)

User avatar
bachjr
Medical Director
Medical Director
Posts: 135
Joined: Wed Nov 11, 2015 3:07 pm
City: Newark
State or Province: NJ
Country: USA

Re: ICU with respiratory problems

Postby bachjr » Mon Jun 06, 2016 8:00 pm

He will NEVER need a trach tube and the gastrostomy tube should be put in by interventional radiology. Don't let them give him general anesthesia and intubate him. You do not live far away. He needs to be transferred to UH in Newark or a center that can take care of him in this way. Read about outcomes of noninvasive management for DMD:

Centers:

JB
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


Return to “Duchenne Muscular Dystrophy (DMD)”

Who is online

Users browsing this forum: No registered users and 1 guest