Useful Links

 NICU information, links, and even study guides!

THINGS TO NOTE…..

Information shared on this blog is not to be considered medical advice, nor intended to replace communication between you and your doctor/specialist

How Does a Ventilator Work?

Ventilators blow air—or air with extra oxygen—into the airways and then the lungs. The airways are pipes that carry oxygen-rich air to your lungs. They also carry carbon dioxide, a waste gas, out of your lungs.

The airways include your:

  • Nose and linked air passages, called nasal cavities
  • Mouth
  • Larynx (LAR-ingks), or voice box
  • Trachea (TRA-ke-ah), or windpipe
  • Tubes called bronchial tubes or bronchi, and their branches

For more information about the airways, go to the Health Topics How the Lungs Work article.

The Breathing Tube

A ventilator blows air into your airways through a breathing tube. One end of the tube is inserted into your windpipe and the other end is attached to the ventilator. The breathing tube serves as an airway by letting air and oxygen from the ventilator flow into the lungs.

The process of inserting the tube into your windpipe is called intubation (in-too-BA-shun). Usually, the breathing tube is put into your windpipe through your nose or mouth. The tube is then moved down into your throat. A tube placed like this is called an endotracheal (en-do-TRA-ke-al) tube.

In an emergency, you’re given medicine to make you sleepy and ease the pain of the breathing tube being put into your windpipe. If it’s not an emergency, the procedure is done in an operating room using anesthesia. (That is, you’re given medicine that makes you sleep and/or causes a loss of feeling.)

An endotracheal tube is held in place by tape or with an endotracheal tube holder. This holder often is a strap that fits around the head.

Sometimes the breathing tube is placed through a surgically made hole called atracheostomy (TRA-ke-OS-to-me). The hole goes through the front of your neck and into your windpipe. The tube put into the hole sometimes is called a “trach” tube.

The procedure to make a tracheostomy usually is done in an operating room. Anesthesia is used, so you won’t be awake or feel any pain. Specially made ties or bands that go around the neck hold the trach tube in place.

Both types of breathing tubes pass through your vocal cords and affect your ability to talk.

For the most part, endotracheal tubes are used for people who are on ventilators for shorter periods. The advantage of this tube is that it can be placed in an airway without surgery.

Trach tubes are used for people who need ventilators for longer periods. For people who are awake, this tube is more comfortable than the endotracheal tube. Under certain conditions, a person who has a trach tube may be able to talk.

The Ventilator

A ventilator uses pressure to blow air or a mixture of gases (like oxygen and air) into the lungs. This pressure is known as positive pressure. You usually exhale (breathe out) the air on your own, but sometimes the ventilator does this for you too.

A ventilator can be set to “breathe” a set number of times a minute. Sometimes it’s set so that you can trigger the machine to blow air into your lungs. But, if you fail to trigger it within a certain amount of time, the machine automatically blows air to keep you breathing.

Rarely, doctors recommend a ventilator called a chest shell. This type of ventilator works like an iron lung—an early ventilator used by many polio patients in the last century. However, the chest shell isn’t as bulky and confining as the iron lung.

The chest shell fits snugly to the outside of your chest. A machine creates a vacuum between the shell and the chest wall. This causes your chest to expand, and air is sucked into your lungs. No breathing tube is used with a chest shell.

When the vacuum is released, your chest falls back into place and the air in your lungs comes out. This cycle of vacuum and release is set at a normal breathing rate.

 

 

Cardiovascular Abnormalities and Arrhythmias in Patients with Ondine’s Curse (Congenital Central Hypoventilation) Syndrome
Cardiac Pacing in a Patient with Diaphragm Pacing for Congenital Central Hypoventilation Syndrome (Ondine’s Curse)This publication expands on the relationship between different PHOX2B mutations and CCHS Download here (PDF)Congenital Central Hypoventilation Syndrome: PHOX2B Genotype Determines Risk for Sudden DeathThis publication explores a relationship between the PHOX2B gene and cardiovascular regulation. Download here (PDF)

 

Genetics

PHOX2B Mutation – confirmed Congenital Central Hypoventilation SyndromeThis publication presents the association between PHOX2B and CCHS Download here (PDF)PHOX2B Mutations and PhenotypeDownload here (PDF)An Official ATS Clinical Policy Statement: Congenital Central Hypoventilation SyndromeThis publication discusses PHOX2B testing in diagnosis and recent advances in treatment Download here (PDF)

UK CCHS Information LeafletDownload here (PDF)EU Patient Information

BookletDownload here (PDF)Contact a familyContact a family Website (Link)US CCHS

Family NetworkUS CCHS Family Network Website (Link)European CHS

NetworkEuropean CHS Network Website (Link)WikipediaOndine’s curse (Link)

Ventilation

Mask ventilation in the early management of Congenital Central Hypoventilation SyndromeDownload here (PDF)From Hospital to HomeDownload here (PDF)

Pacemakers

http://www.averybiomedical.com/

Managing Adults With Tracheostomies and Ventilator-Dependence

http://www.asha.org/Publications/leader/2004/041019/f041019a.htm

 

http://www.hope2sleep.co.uk/page/home

This website is primarily for people who have the ‘condition’ Sleep Apnoea (spelt Apnea in some countries) and is the place to get support and buy comfort accessories and masks for CPAP, BIPAP or APAP Treatment.   Some of the products available are from the USA, and you can buy them here to save on high postage and other Import Duty/Taxes often incurred.

You may have stumbled across this site as you, or someone you know, is troubled by a Snoring problem.  Kath Hope, the owner of Hope2Sleep, has Sleep Apnoea herself.  Bearing in mind that a fairly high percentage of snorers are undiagnosed sufferers of Sleep Apnoea, which is a serious condition, please have a look around this website.  If you suspect you may be a sufferer of this ‘condition’ for your sake TAKE ACTION NOW!!

Sleep Strips can be bought on this website too for testing for the likelihood of the presence of Sleep Apnoea, and we also provide a Sleep Apnoea Screening Service which will prove if you have Sleep Apnoea and Oxygen Desaturations.  There is a link to the Epworth Sleepiness Scale and a Sleep Quiz on the ‘Sleep Apnoea Info’ page of this website.  Also, please do not hesitate to contact us for further advice and support.

Our ‘Hope’ is that you will find help here in sleeping more comfortably with your ‘condition’, and get the restful sleep and good health you deserve!

 

 

Better Sleep Better Life – Sleep Apnea Machine


Information on Sleep Apnea and CPAP therapy.

 

http://www.ukcpap.co.uk/ventilator-trend-vent.php

 

BiPAP Respironics
Information on Sleep Apnea and BiPAP Sleep Systems.

Philips Respironics UK

respironics.rukcustomerservices@philips.com

http://www.respironicsonline.co.uk
http://www.philips.co.uk/respironics
http://www.sleepapnoea.respironics.co.uk
http://www.twitter.com/respironicsuk

 

InVent Health – Long-term ventilation and complex care at home  

A care provider for children and adults with long term, complex health care needs.

 

Cpap machines tips for avoiding 10 common problems

http://www.sleepconnect.com/news-articles/318-cpap-machines-tips-for-avoiding-10-common-problems/portal

 

Traveling with a ventilator

 http://hypnagogia.squarespace.com/blog/2012/9/8/travelling-with-cpap-bipap.htm

 

Further ventilator related information /Co2 monitoring 

http://www.mcarthurmedical.com/upload/product_file639.pdf

 

Ventilation Management  

http://emedicine.medscape.com/article/810126-overview

 

Air travel and non-invasive
ventilation

http://www.mndassociation.org/Resources/MNDA/Life%20with%20MND/Information%20sheet%2014E%20-%20Air%20Travel%20and%20non-invasive%20ventilation%20(NIV).pdf

 

Medical and ventilator equipment for sale

http://www.eceemedical.com/tilogytabletopstand.html

 

2013 Resource Directory for Ventilator Assisted Living

http://www.ventusers.org/net/VentDIR.pdf

 

http://www.completegroup.co.uk/
The Complete Group is a leading UK provider of complex health care, delivering person-centred support enabling children and adults with disabilities to lead full and independent lives in their own homes.

We specialise in domiciliary care for clients with acquired brain injury (ABI), traumatic brain injury (TBI), spinal cord injury and other disabling conditions, including cerebral palsy, multiple sclerosis and muscular dystrophy. We are experienced in working with ventilator-dependent clients and are experts in paediatric care for children with complex needs.

The dignity and quality of life of the people we support is paramount. We also understand that our clients and the funding bodies we work with – including primary care trusts, social services departments and the independent sector – look for real value for money in purchasing complex care services.

A key feature of our person-centred approach is the involvement of our clients in the recruitment of the fully trained personal assistants who provide their day-to-day complex care, under the supervision of skilled nurses. This supports the development of the strong, long-term working relationships between clients and carers that are at the heart of our success.

This is our fb group where you can exchange queries,support and make friends

https://www.facebook.com/groups/49716687743/

 CCHS Youngsters 

https://www.facebook.com/groups/229785103720444/

 

CCHS, or Congenital Central Hypoventilation FB support Group

https://www.facebook.com/groups/9267452603/

 

Sleep Apnea/Apnoea Awareness, Symptoms, Treatment, Causes, and Cures

https://www.facebook.com/groups/218156906792/

 

22q and breathing problems.

https://www.facebook.com/groups/333011440061423/

 

Facebook Sleep Apnea New Group

https://www.facebook.com/groups/248341551870718/

 

Community Caring about Sleep Apnea diagnosis and Sleep Apnea treatment,

CPAP machines, Sleep Apnea surgery and dental appliances.

http://www.sleepguide.com/

 

Facebook Ondines Support Group

https://www.facebook.com/groups/49716687743/

 

Facebook CCHS Support Group

https://www.facebook.com/groups/cchs.international/

 

Facebook CPAP USER support page

https://www.facebook.com/events/466410823430667/?ref=22

Irish Sleep Apnoea Trust ISAT

http://www.isat.ie/

 

The Sleep Apnoea Trust Association

http://www.sleep-apnoea-trust.org/

 

InVent Healt

We are dedicated to providing outstanding care for our patients. Our highly skilled staff recognise that their experience and expertise in complex care can change the quality of life for patients and their families.

As a care provider for children and adults with long term, complex health care needs,

we work hard to make the lives of our patients, their families and our NHS colleagues better through the high standards outlined in our values statement and policies.

http://www.inventhealth.co.uk/case_respiratory_condition_ventilation.php

 

sleep disorder help and information websites

http://www.yourwebsite.com/www.nodss.org.au/

 

Narcolepsy UK 

Narcolepsy UK is a charity (No. 1144342) that supports people with narcolepsy, their families, carers and others interested in improving their quality of life.

http://www.narcolepsy.org.uk/

 

Wake Up to Sleep is ResMed’s comprehensive sleep apnea support community intended to help people along their entire journey—from awareness to diagnosis to successful treatment.

Features of the community:Treatment news and information

Educational videos and FAQs

Inspirational patient stories

https://www.wakeuptosleep.com/

 

International Ventilator Users Network’s mission is to enhance the lives and independence of home ventilator users and polio survivors through education, advocacy, research and networking.

http://www.ventusers.org/

UK Children on Long Term Ventilation (LTV)

http://www.longtermventilation.nhs.uk/site/1/home.aspx

 

http://www.asiliveandbreathe.co.uk/

As I Live and Breathe is an Independent Book Publisher covering health issues,well-being and human interest stories.
The site was first set up for sharing links and information on healthy living and medical conditions such as Scoliosis, M.E., and the use of CPAP / Ventilators for Obstructive Sleep Apnoea (Apnea) or other sleep-disordered breathing problems.

Now we publish books on associated subjects and show useful links on our Facebook page.

See our on-line pages including our Easy Recipes, and basic information on Scoliosis.

Our recent publication is a children’s illustrated book about using a CPAP machine:
A Monkey, a Mouse and a CPAP Machine”.

This book is WINNER (pre-school picture book category 2011) of The Wishing Shelf Independent Book Awards.