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

In the News » Newsletter

Spring 2007 Edition
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Grace

GraceGrace is a 3-year old girl born premature but in good health. Due to an accident when she was two weeks old, she suffered a severe hypoxic event when her lungs collapsed. The lack of oxygen caused severe trauma to her brain. She has Cerebral Palsy, Hydrocephalus, Shunts, Periventricular Leukomalacia, Cortical Blindness, Severe Gastroesophageal Reflux, G-Tube, and Seizures. She is unable to speak, crawl, or even lift her head.

Grace has had many hospitalizations over the past 2 years including 3 brain surgeries, 2 abdominal surgeries and many ER visits.

Because of her seizures, she is hospitalized on an almost monthly basis and she will certainly over time need additional brain surgeries to revise her shunt when problems with it occur.

At different times, both of Grace's parents have lost their jobs since her birth and have done everything possible to make ends meet. The family has incurred mounting bills due to the care of their daughter and the out-of-pocket expenses they have incurred from things such as her hospital stays in Manhattan. They have also exhausted their retirement savings. With a trip to California for a medical procedure not covered by Grace's insurance planned for the future, they are again faced with how to pay for travel, food, and lodging during the procedure.

Grace's mom and dad have done their best to meet her needs. In the near future, Grace will need additional equipment to help her quality of life, including a hospital-style crib.

Adriana

GraceAdriana is a 22-month old baby girl born with multiple congenital defects. She has a very large Omphalocele, where by some of her internal organs were outside her body at birth. This is a life-threatening condition. She also has a complex cardiac defect, Pulmonary Artery Stenosis, Pulmonary Venous Compression, cyst on the brain, Tracheomalacia, Tracheal Bronchus, Grade 2 Laryngeal Cleft, GERD, a G-tube, and Left Eye Ptosis.

Adriana has been in the hospital almost every month of her life with 9 surgeries & 7 procedures, including open-heart surgery. Because of her various airway issues, Adriana has had 2 full respiratory arrests, needing resuscitation and intubation each time. She's now on humidified oxygen during the day, but must sleep on a ventilator at night.

Adriana's mom & dad sleep in shifts to ensure she was not aspirating during her continuous G-tube feedings, each managing on 4 hours of sleep. The day is spent taking blood pressure readings, administering medications, checking O2 saturations, and monitoring feedings via pump.

The family's finances have been affected due to the loss of one income since the birth of Adriana and the mounting medical bills. The parents 401k have also been exhausted. This does not include the nearly $30,000 in out-of-pocket medical expenses not covered by insurance, and the expense of traveling to Boston twice in the last year.

At 22 months, Adriana is still unable to crawl or walk and was recently fitted for a stroller/wheelchair. In the near future, she will need a stander/walker, a hospital-style crib, and a generator to keep her life support equipment functioning during power outages.

 

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