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Avery Biomedical Devices
The Avery Breathing Pacemaker System is a phrenic nerve stimulator, also called a diaphragm pacemaker. It consists of surgically implanted receivers and electrodes mated to an external transmitter by antennas worn over the implanted receivers. Phrenic pacing provides ventilatory support for patients with chronic respiratory insufficiency whose diaphragm, lungs, and phrenic nerves have residual function. For more information on Avery's Breathing Pacemaker technology, a referral, consultation, implantation processes or the quality of life, conatct Neil Grossman, Director of Sales at, or Nicole Ficarra, Communications Coordinator at

Suffolk County Emergency Preparedness Registry
The Suffolk County Office of Emergency Management has developed an expanded the Special Needs Registry into a  county-wide registry for ALL residents to include those with special and/or functional medical needs. This secured encrypted registry is voluntary and free. It is designed to assist first responders and emergency planners in identifying those residents that may need assistance in evacuating and special sheltering during an emergency so that they may develop the necessary plans. It will also aid emergency planners in the development of shelter plans for those residents with Special and Functional Medical Needs, while enhancing communication to the end user and there emergency contacts.

Two things that I wish I had known about trach tubes...
Knowledge isn't just power, when you're trach-and-ventilator-dependent, knowledge is power, safety, even survival.
A local tragedy involving the death of a young man we knew due to the inability to get a trach back in during an emergency led to extra awareness in our community and much more diligence regarding carrying emergency back-up trachs everywhere, especially a smaller-size hard Shiley trach and Ambu bag with face mask for emergencies of stoma closure or restriction.  This knowledge saved my life in May 2000 when my tracy stoma closed completely, skin closed over from behind, during a routine teach change.  Mom was able to bag my face until my grandmother could force the much smaller super hard plastic Shiley through.  That August I had the stoma surgically "revised" to prevent this from recurring, but knowing to have the emergency smaller trach and bag with mask saved my life.  Knowledge is survival sometimes. 
But it's inevitable that there were things I didn't know.  Here are two trach tube facts that, though not directly related to life-and-death, I really wish I had known...
1)  Complications of the initial tracheostomy procedure: placement of your first trach tube requires tracheotomy surgery, a fairly quick and straightforward procedure to create the hole or stoma where the tracheostomy tube (trach tube) is placed.  In the post-op recovery phase, infection mitigation/prevention needs to be emphasized, i.e. clean the new stoma site daily or even Q12. Unfortunately it happens so often with new trach stomas, that the hospital nurses are reluctant to disturb the new stoma/wound, so no serious cleaning of the area occurs for multiple days post-op, and infection sets in at the site.  "Clean the site" sounds basic, but is often overlooked by doctors and hospitals who have a surgery-and-medicine-only focus... it's also seldom mentioned in other material about the tracheotomy surgery online.  A localized infection at the stoma isn't likely to spread and will be treatable with topical and/or oral antibiotics but it can certainly make the tissues in the affected area more complicated down the line.

2) There's no magic bullet for speaking with a trach. Though me and my younger brother have always talked on our ventilators, I spent the better part of a decade trying different trach tubes and trach advice, thinking that I could speak as clearly as Christopher Reeve if I had the right devices, super trach or super vent.  While the right technology is very important, and some trach tubes, vents, etc. are undoubtedly better for my unique needs than others, the ability to speak is influenced most by the ways your underlying condition changes your vocal chords and the pertinent musculature.  With high spinal cord injuries (like Reeve's) that necessitate mechanical ventilation for breathing, speech can be affected but more vocal musculature is likely to remain than in late-stage muscular dystrophies (or in our case, unspecified infancy onset metabolic myopathies).  In some cases a speaking valve can make a big difference for a trached or trached-and-vented person; in my case the impact was small.  It helped, but with the muscle weakness being so prominent and unchanged, and the pre-existing stoma damage and leakiness, there's no "magic bullet," and I sounded much like before.  I still speak, though. 
Disclaimer: I'm a guy on a vent not a doctor, and my account of my own experiences shouldn't be construed as "medical advice." 

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