Angela's House
Coordination of Complex Home Care Services and Residential Services for Medically Fragile Children

In the News » Newsletter

Spring 2010 Edition
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Angela's House helps to coordinate the complex array of services needed to support families so that they may care for their medically frail children at home. Angela's House offers a home-away-from-home option for medically frail children when they cannot live at home. We understand the day-to-day, year-to-year support is very important for the well being of the children and their families.

Dylan

Our long story is definitely not one to be jealous of although it does have a very happy ending, Dylan! Dylan has proven to us that there is strength that lies within that we never knew we had. Looking at Dylan you would never know what he has been through, he spends his days thinking that he is the most normal 2 1/2 year old boy in the world.

Born premature into the NICU, Dylan was intubated immediately followed by many tests, medications and interventions. Dylan's respiratory distress is due to a condition called CCHS (Congenital Central Hypoventilation Syndrome) which only affects about 400 people in the world. Basically, Dylan breathes when he's awake and relies on ventilatory support during any periods associated with sleep. Dylan has a trach to guarantee that he gets the necessary vent support.

During his recovery from the trach surgery, he developed what the doctors diagnosed as a gastrointestinal issue associated with CCHS. Dylan's lacking the ganglion cells and peristalsis necessary to move food through his intestines so it was decided to do surgery. He was so 'critical' that this 5 hour surgery was done bedside. He had severe bowel resection of both his large and small intestines which left him with an ostomy bag and a grim outlook on recovery. At this point, Dylan spent so much time in the hospital due to lack of weight gain that the answer was he get a broviac (stable IV that can last for many months). The hope was that he would gain weight from TPN and Lipids which are nutrients/vitamins/fats that go directly into his blood stream. This way he would be guaranteed weight gain in hopes of allowing his gut time to heal. Once again, we were back to hearing that the possibility of him making it through this recovery period was slim. We heard that he was 'not going to make it' for the first three months of his life. During Dylan's amazing recovery we ended up in several PICU's, ER's and rehabilitation hospitals which placed us 5 hours away from home for the 11 months he was hospitalized after birth. Dylan has been in and out of surgeries, blood infections, trach infections, G-Tube infections, radiology, viruses, testing and various settings that are unexplainable. Numerous doctors/surgeons/specialists have told us that it's amazing he has recovered so well and we were finally cleared to go home.

His transition home entailed gathering doctors, 24 hours of nursing, supplies, equipment, inspections, generators, LIPA/fire department/ambulance lists and etc... there are people in and out of the house all day long... my phone/text messaging/email are non-stop! We are just starting to realize that our lives will never resemble the life that we once thought we would have. With this realization, we have accepted the fact that it takes a very long time to establish your 'team' to keep Dylan's details attended to. Angela's House (ATDC) has provided us with ongoing-case-management which oversees all of Dylan's medical, insurance and early intervention needs. It is so helpful to have people in our lives to help make all this seem a bit more manageable. THANK YOU!!!

 

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