When one tours GMCH, one learns and becomes more engaged with what we do for our kids and their families than one would have learned online or from just speaking with someone. There is no other place where visits from therapy animals, pizza tossing and cupcake decorating or hydrotherapy might help to aid in pain management more so than pain medication itself. Also, the physical structure of the House makes one feel at home, as if they are walking down the hall to their kitchen, sitting at the fireplace and drinking hot chocolate (or whatever other goodies Chef Barbara Sardella and staff have prepared) with a close friend.
Helping our kids with their health conditions that they endure day in and day out is complicated; not just for obvious emotional and psychological reasons, but in terms of understanding what illness a child has, how they can be treated, etc. It seems to be a reoccuring them on those medical tv shows that "doctor's" always have to put their theories, diagnosis', etc., into "Lehmann's terms" for their patients. What in the world does "sarcoma" mean? Or "histiocytocytosis?" What is "Absolute Neutrophil Count" or "Anterior Mediastinotomy?" A doctor would probably tell you these were all very basic concepts, procedures...or whatever. For a place like GMCH, there are words we can leave to the professionals to know definitions for, and there are words that everyone should kno the definitions for, and understand, in lieu of what we do for our kids and what sets us apart from other pediatric medical facilities. Here are just a few definitions:
Palliative Care (from Latin palliare, to cloak) is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than striving to halt, delay or reverse progression of the disease itself or provide a cure. The goal is to prevent and relieve suffering and to improve quality of life for people facing serious, complex illness. For more information, please visit (http://en.wikipedia.org/wiki/Palliative_care). Dr. Jan Pankey, our Associate Medical Director, joined GMCH following the completion of a pediatric palliative care fellowship. Her professional interests are pediatric pain and symptom management and cultural diversity in end-of-life settings.
A Child Life Specialist focuses on the psychosocial development of children, and encourages effective coping strategies for children and their families under stress. Child life specialists recognize individuality in patients, and use a range of developmentally appropriate activities, including play, preparation for a medical procedure, education, self-expression, and family support to help cope with hospitalization, illness, or death and dying. Child life specialists are trained to take into account the cognitive, emotional, and physical development of each child in order to encourage optimum development of children facing a challenging experience, particularly in relation to healthcare and hospitalization. http://en.wikipedia.org/wiki/Child_life_specialist. GMCH is so lucky to have an in-house Child Life Specialist, Rebecca Simonistch, who facilitates legacy building for families, sibling support, special trips and events, and weekly programming.
Hydrotherapy involves the use of water for soothing pains and treating diseases. The use of water to treat rheumatic diseases has a long history. Today, hydrotherapy is used to treat musculoskeletal disorders such as arthritis, ankylosing spondylitis, or spinal cord injuries and in patients suffering burns, spasticity, stroke or paralysis. It is also used to treat orthopedic and neurological conditions and to improve fitness. http://en.wikipedia.org/wiki/Hydrotherapy. This term was probably pretty obvious, but it's effects aren't quite so to someone new to GMCH. When you are floating in water, you are weightless, and for some of our kids, weightlessness is the best feeling they have had in years...and might ever have. GMCH's Hydroptherapist Sheila Pyatt works with our children to lessen their aches and pains and is very passionate about the positive effects that this kind of therapy has on pain management.
Such terminology explains the kinds of programs we have at GMCH. These programs are what make GMCH so different from a hospital or larger medical institution, along with the people who personalize these extraordinary service for each child and family.