We have lots of Appointments coming up this month. We are now spread out among KKI, HOPKINS, CHILDRENS, CHOP and NIH. This is not ideal but finding the right team for Addyson is vital and I think we have finally narrowed it down. It would be amazing for these kids who cross specialist if you could have one appointment and see the whole team, however we have yet to find that situation. We are lucky that at CHILDRENS and CHOP we can usually see multiple specialist in one day.
• OCT 16th – Psychiatry @ KKI
• OCT 16th – Psychology @ HOPKINS
• OCT 28th – GI & Palliative Care
• OCT 29th – Psychiatry
We also have a few appointments/procedures scheduled:
• NOV 12th – SURGERY (ADDYSON – a few days inpatient). Hoping to be home by the 14th or 15th. 24hr eeg possible during this time
• NOV 27th – GENETICS @ HOPKINS
• DEC 4th – NEUROGENTICS
• JAN 16th – RARE DISEASE CLINIC & NEUROLOGY Appointments
• FEB 12th – GI (MOTILITY) & RHEUMATOLOGY @ CHOP
HOPKINS: PULMONOLOGY / PSYCHOLOGY / SURGERY / HEMATOLOGY-ONCOLOGY
CHILDRENS: CARDIOLOGY / NEUROLOGY / NEUROGENETICS / SURGERY / RARE DISEASE INSTITUE / GI
CHOP: GI MOTILITY / RHEUMATOLOGY / Autonomic Dysfunction Clinic
KKI: PAIN MANAGEMENT TEAM / PSYCHIATRY
NIH: CLINICAL TRIAL for FEVER DISORDER
What Is Pediatric Palliative Care?
Pediatric Palliative care is specialized medical care for people living with a serious illness. Palliative care focuses on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the child and the family. A specially-trained team of doctors, nurses, social workers and others provide palliative care. The team works together with the child’s other doctors as an extra layer of support. Palliative care is appropriate at any age and at any stage of an illness, and it can be provided along with treatment meant to cure. Pediatric palliative care addresses serious medical conditions, including genetic disorders, cancer, prematurity, neurologic disorders, heart and lung conditions and others. It relieves the symptoms of these diseases, such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping, anxiety and depression. In short, it helps the child and the family improve their quality of life. Pediatric palliative care is family-centered. It helps with communication and coordination of care. With the close communication that palliative care provides, families are better able to choose options that are in line with their values, traditions and culture. This improves the well-being of the entire family.
How Palliative Care Helps Parents and Other Loved Ones
Pediatric palliative care recognizes that many people are affected by a child’s illness, especially parents, siblings and other family members. This also includes extended family, classmates and friends. Providing support for anyone in a sick child’s life is an important part of palliative care. The team approach of palliative care addresses different needs and priorities and can be flexible as needs change. Some family members may benefit from referrals to individual or family counseling. Some siblings may receive support through pediatric therapies such as Child Life programs, art or music. Many parents struggle with how to talk to their children about illness. Many siblings struggle as well. The palliative care team can provide guidance, resources and connections with appropriate resources for anyone involved in a child’s life, including the school and community. For parents in particular, dealing with the complex medical system can be a difficult and troubling task. Many seriously ill children have many medical providers taking care of them, and receive treatment in more than one location. This can add to parents feeling overwhelmed and confused by the amount of information they are given. Parents also struggle with making the “right” choice for their child and family. These decisions can range from practical issues—like whether to send a child to school during medical treatments—to more complicated ones about which medical treatments to try. By spending time getting to know the patient and family, the pediatric palliative care team can help them make decisions that are in line with their goals and values.
Beaming with hope 