Project Shui for Tay-Sachs

Home Health Care For Kids With Special Needs


Contents
*Video or Pictures of Tay-Sachs

Project Shui Home Page

   *
Welcome From Shui
   What is the Cure Tay-Sachs Foundation?
   How Close are we to a Cure?
   *Rachaeli's Friends
   Sign up for Updates
*Bar Mitzvah Video Invite
What is Project Shui?

  
Thank You From Shui
   Internet Ads&Marketing

What is Shavuot?
  
Shavuot & Shui's Sister

What is Tay-Sachs?
  
Tay-Sachs Diagnosis:

      Part I

      Part II

   Genetics Made Fun
      *Lysosomes The Movie
      *Genetics 101 Video
     
Narrated by Alec Baldwin
   Genetics 101 Article

*Inspirational Videos

  
*Beautiful Faces of Lysosomal
  
*Tay-Sachs Talk
   *Connor Hopf Cure Tay-Sachs
   *2010 Faces of Tay-Sachs
  
*My Soul Sister-Molly Grace
  
*Our Star Dakota
   *Rachaeli's Song of Love
   *Elise-A Child Living with Tay-Sachs
   *Last Laugh
   *Meet Gavin

Tay-Sachs in the Media
   *
Glee Sectionals
   *Grey's Anatomy Sweet Surrender
   *Law & Order SVU MERCY
   *
21 Below Documentary
Legal & Financial Issues

   What is Wrongful Life?
   Right to Live in the United Kingdom
   How to Pay Medical Bills?
   Social Security Disability
   CHIPRA-Insurance for Kids
   Medicaid Waiver Programs
   Katie Beckett Medicaid
   Who is Katie Beckett?
  
Why Do We Need The
     
Katie Beckett Waiver?
  
Eligibility for Katie Beckett
   Katie Beckett in Georgia
  
Katie Beckett's Going Home
   (from People Magazine 1981)

Treatment or Cure
  
Canavan Pioneers
   *Gene Therapy
   Jacob Sheep Sensation
   Article in Forward-Jacob Sheep
   *Stem Cell Transplants
   Enzyme Replacement
   Substrate Inhibitors
   Should I Try Zavesca?
   Letter for Insurance 
      Approval for Zavesca
   Chaperone Therapy

In-Home Medical Care
  
Home Health Care
   Respiratory/Secretions
   Coping Strategies
  
Coping with Humor w/ Shui's Dad
Rachaeli's Story
  
Shocked by Tay-Sachs Article
The Project Shui Family
  
Mommy's Online Journal
   Abba's Online Journal
   Shui's Fun Pages

Guestbook
Sitemap





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Home Health Care For Kids With Special Needs

Pediatric Home Health Care: An Overview

Children with complex medical conditions often need skilled nursing services in order to be cared for in the home setting. This means skilled professional nursing care but it also means a team of respiratory, occupational, physical, and speech therapists may contribute to the care of the child at home.


Pediatric Home Health care...What it isn't:

Pediatric home health care is a professional specialty often misunderstood as a babysitting service rather than the skilled nursing specialty it is. Another fact that is also misunderstood and often understated is how well these fragile children do developmentally when cared for in their own homes surrounded by the love and care of family and friends.

Pediatric Home Health care... What it is:

Pediatric home health nurses virtually run a mini- intensive care from the bedrooms of these medically fragile children. Pediatric home health nurses who provide hourly shift care in the home for children medically challenged often must care for a ventilator dependent child, one who depends on a tracheotomy to breath, or one who depends on a gastric tube for feeding and nutrition. These kids require constant monitoring for adequate breathing and oxygenation and often require frequent suctioning. Skilled nursing in the home setting allows for the parents to go to work, attend school, or get some much needed sleep.

"The challenge in pediatric home care moves from basic survival (breathing) to addressing and enhancing developmental potentials for these medically fragile children in their own home setting." states Tina Gonterman, RN AVP Loving Care Agency.



Federal Guidelines...What this means:

Skilled Pediatric Home Care Agencies abide by federal and state guidelines for Medicare and Medicaid providers. What that means for parents is that the agencies must have strict policies and procedures that they follow in order to be approved to provide skilled nursing for their child.

Agencies must also follow OSHA standards for occupational health and safety. The agency and the staff employed must be compliant with dozens of specific regulations in order to be approved to provide the care needed for a medically complex child. These guidelines and regulations are put into place so that skilled and safe care can be given to every child.

Professional nurses including RN's, LPN's, Respiratory Therapists and developmental therapist working in home care must be at the top of their game when it comes to caring for these children in the home setting, It is a mini intensive care for some of these kids with ventilators, monitors, suction machines, nebulizer machines, tube feedings and pumps and a variety of other equipment needed in the home to provide adequate care. The children are often on numerous medications, have adaptive equipment for mobility, and need moved from bed to chair to bed again several times within a shift often being accompanied to the school setting as well. The care for a child at home is a complex and challenging task, as skilled nurses care for every bodily function and provide for the needs of children who cannot care for themselves.

Terri Forehand is a registered nurse specializing in critical care, pediatric critical care, and pediatric home care. She is a freelance writer based in Indiana. Visit her blog for parents and kids dealing with illness and loss at http://heartfeltwords4kids.blogspot.com or her blog for beginning writers at http://terri-forehand.blogspot.com Contact by email at terri.forehand@gmail.com for more information about her writing services. She currently is working on prayer books and both fiction and nonfiction for children.


By Terri Forehand Platinum Quality Author
Article Word Count: 509
Original Article: EzineArticles.com

Article Source: http://EzineArticles.com/?expert=Terri_Forehand

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