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

In the News » Newsletter

Spring 2009 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.

Andrew

I try not to think back to the summer of 07, which was by far the worst summer of my life. I try not to think about it because it brings back such terrible memories of raw emotions that I felt. After I learned of my son's condition, I literally thought I was going to die. I felt like the life was sucked out of me. The doctors told us that Andrew had several brain malformations called microcephaly/absent corpus collosom and simple gyral pattern . They said he would not develop normally, that he would not walk or talk, and would be severely retarded. They told me he had cerebral palsy and increased muscle tone. I tried to deny it. Andrew looked a lot like the other babies in nursery. He was wrapped up tight in a receiving blanket and looked like a pea in a pod. He drank from a bottle, although he needed some help, and he slept. But he also had seizures, slow heart beats and reflux. I did not want to hear or know of this. I just wanted him home. I could take care of him- I was a nurse for over 10 years and I had seen a lot. I was sure I could handle a 5 pounder! So in my denial state I refused home care nurses on discharge from the hospital. I could do it. I could do it all. My husband very reluctantly agreed.

Well, I was home 3 weeks with Andy when I couldn't take it any more. He trembled so badly from his spasticity. I had a hard time positioning and comforting him. I could barely get his medications in and it was getting harder and harder to feed him. We decided to take him to Schneider's Children's Hospital for a second opinion on his treatment plan. They admitted him right away when they saw the condition he was in. The nurses immediately referred us to social work. I was inconsolable and helpless. I felt like a failure and I didn't know what to do. This was the first time I heard about Angela's House. The social worker was discussing the possibility of us placing Andrew in a 24 hr nursing care facility. I gasped at the thought. How could a mother do that to her child? I decided I was not ready for that yet but she advised me to keep the name in a safe spot. At this point, we used hospice services for support until the Care at Home Program kicked in. During this time, I got the courage to call Angela's House and spoke with a compassionate person named Laurie, who gathered information about my case. Before I knew it, Andrew stabilized and "graduated" from hospice. We realized he would still require ongoing help which the Care at Home Program would offer. We requested Angela's House to assist us with case management. I was introduced to my caseworker Sharon and her supervisor Bonnie. It was at this time I was able to meet with the founder of Angela's House, Bob Policastro. I had heard such awesome things about how his organization had helped so many people. He was so genuine and offered to reimburse respite expenses until I found steady nurses. He understood how our situation effected us financially. He offered to help reimbursed us for some of Andrew's expenses until I was able to return to work as I had before all of this began. Once Angela's house helped us get into the Care at Home Program, my case manager immediately helped us secure nursing services which we so desperately needed.

I was beginning to accept how Andrew's life was going to be, and I gathered up the courage to actually go to Angela's House and see what it was like. Bob met me there and I immediately felt comfortable there. He explained how life for the children was there and about the continual family involvement. He was very empathetic towards my feelings of guilt and sadness. We passed from room to room and I saw pictures of families-parents, siblings, grandparents, aunts, uncles and cousins. All of these people had similar circumstances and had experienced many of the things we had. Suddenly I didn't feel so alone. The people of Angela's House just want to make it better for your family and will help in any way they can. Words can not express my gratitude to them. I know that in the coming days and months, we will have our "family" at Angela's House to support us and help us during hard times and tough decisions.

I call my Andrew my angel of love. He reminds me to be strong, live one day at a time, live simply, help others, but most of all to love unconditionally.

 

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