Apr 19

Melanie’s Story: Adopted by an Army Family Who Cares for Her Complex Medical Needs

4-18_-_Melanie_Carrigg_1.docx.jpgIn honor of Month of the Military Child, learn how military families like the Carriggs pursue care for their daughter, Melanie, who has complex medical conditions.

My husband and I met in high school. Shortly after graduation, he joined the United States Army. Just days after he graduated from basic training we were married — our life together was everything I dreamed it would be. We were blessed with two biological sons, and in November 2012, our family welcomed its newest member, a beautiful baby girl.

People ask me why we chose to adopt. The answer is simple: Melanie was the miracle we had long been praying for. We learned in 2008 that our son has a rare disorder, Mastocytosis, one that we could potentially pass on to another child. So, we chose to adopt, and with TRICARE as our insurance, we never questioned adopting a child with complex medical needs.

Apr 16

Update on Apollo

4-16_Apollo_and_big_brother_cropped.jpgSpeak Now for Kids Family Advocacy Day alumnus Apollo Howell was born in September of 2014 with complex malformations of his esophagus and trachea. In his first few months of life, Apollo spent time in neonatal intensive care units (NICUs) at both Dell Children's Medical Center of Central Texas in Austin, Texas and Cincinnati Children’s  in Ohio. It was at these hospitals that Apollo had many surgeries, including a relatively a new, life-saving procedure, a slide tracheoplasty to rebuild his airway. At nearly six-months-old, he finally came home, but required 24-hour care. 

“As a result of traveling out-of-state for nearly two-months to be with Apollo while he was in the NICU, my husband and I both lost our jobs and our health insurance,” explains Apollo’s mother, Kate. “Medicaid was our lifeline.”

Apr 12

Jacob’s Story: Looking Beyond the Military for Health Care

4-12_Sorell_Family_2.jpgPreviously, Holly shared her son Jacob’s diagnosis with a rare form of epilepsy and the lessons her family learned navigating the military insurance program known as TRICARE. Below, Holly shares her concerns with the current system as the family looks towards an eventual end to their military coverage.

Today, we keep a majority of our care at Walter Reed National Medical Center. The subspecialty department is well-acquainted with Jacob and our entire family — we have a medical family there and support while we go through many uncertain work-ups and unknown future outcomes.

When we need durable medical equipment, we go to seating clinic. A nurse case manager, physiatrists, physical and occupational therapists, speech pathologists and vendors are present to help us specifically choose the equipment that our son needs. It’s fully covered with a nominal co-pay. Without this equipment and all of this support, I would be completely floundering. I am convinced Jacob is now at his fullest potential for him as a result of TRICARE’s approval for equipment.

Apr 11

Jacob's Story: Diagnosis and Treatment in TRICARE

4-11_Sorell_Family_2.jpgIn honor of Month of the Military Child, learn how military families like the Sorells pursue care for their son, Jacob, who has a complex medical condition.

I will never forget the panic stricken moment in 2014 when my youngest child had spasms that presented as full-body ‘jack knife’ motions. We rushed to the closest military treatment facility just outside of Washington, DC. It was the week before the Army planned to draw up orders for my husband to deploy overseas. Up until that point, our children rarely if ever went to a doctor — like most families, our experience with military physicians and staff was limited to acute illnesses and typical well-child visits.

Although the on-base emergency room was not adequately staffed on a weekend to deal with his spasms, we were able to schedule an appointment the following Monday. Jacob went into continual seizures on the floor in the waiting room and was immediately admitted to the hospital while awaiting his first of many visits with the pediatric neurologist. Our neurologist sat down with my husband and me and delivered the news — it was a rare form of epilepsy. He went on to explain that it causes catastrophic brain damage.

Apr 09

Alexander: My Miracle Child

4-9_Schiavulli_Photo.jpgMy son, Alexander, is five years old and has Medicaid through a waiver program. He was diagnosed with Tetralogy of Fallot at 2 ½ months old and relied on Medicaid since birth.

Once Alexander was diagnosed with his condition, our entire lives changed. He started having medical testing and surgeries. In five short years, Alexander has had six chest caths and three open heart surgeries. He also has had 12 other surgeries and procedures so far.

Apr 02

Lincoln: The Six Million Dollar Kid

4-2_Niece_Family.jpgBy Ron and Whitney Niece

Our son, Lincoln, was born March 1, 2014. Unbeknownst to us with a congenital heart defect called Tetralogy of Fallot with Pulmonary Atresia. Lincoln was transferred to Riley Hospital for Children in Indianapolis at 26 hours old.

Due to Lincoln needing around the clock care and prohibited from daycare, we were down to one income struggling to make it and just found out our son required all this special care. As he waited on his first surgery, we sat there as new parents stressed out about the bills that would be coming our way for the rest of his life and how we would get all our bills paid.

Mar 31

The Doctor-Patient Relationship: How it Impacts Care

3-31_Kidney_Month_-_Dr._Warady_with_patient.jpgBradley A. Warady, MD, is the Director, Division of Pediatric Nephrology at Children’s Mercy Kansas City, and a faculty leader for the Children’s Hospital Association’s SCOPE Collaborative, which is focused on improving outcomes for children with renal disease. This story is courtesy of Children's Mercy Kansas City.

When I started practicing medicine more than three decades ago, it wasn’t uncommon for a doctor to tell his patient - this is what you need to do to get better- and assume that the directive would be carried out. There wasn’t a two-way conversation or feedback from the patient and family that was taken into consideration when devising the treatment plan.

But times have changed. Now, with an increased emphasis on family engagement and the doctor (healthcare team) – patient relationship, and acknowledgement of the importance patient and family input has on medical decision making, a new and better treatment paradigm is taking shape.

Mar 29

Meet Rachel: Certified Child Life Specialist

3-29_Child_Life_Month_-_Prepping_Zungs.JPGSpeak Now for Kids honors child life professionals who are dedicated to helping children with difficult health circumstances. The following testimonial is courtesy of the Association of Child Life Professionals (ACLP).

Rachel Kinsinger of Loma Linda University Children's Hospital is an example of a Certified Child Life Specialist (CCLS) who thought outside the box (in this case, an MRI machine) to create an innovative approach to procedural preparation that resulted in reduced risk, cost, and wait time.

Rachel was completing a fellowship at Loma Linda University Children's Hospital when the Child Life department was contacted by an MRI physicist about long wait lists for scans. All children under the age of 12 were automatically scheduled for scans using general anesthesia, and the wait time was at least three months.

Mar 28

Saving a Child’s Life

3-28_Kidney_Month_-_Alex_Fox1.jpgI am a living kidney donor. On May 31, 2016, I was blessed with the opportunity to give one of my kidneys to the sweetest, special needs 15-year-old I have ever met. How did that happen? How is she doing today? Let me answer those questions.

In October 2015, I saw a post on Facebook from the sister of a woman with whom I went to school. It was a plea for a kidney donor. I was moved enough to reach out to that mom and say I was willing to be tested for her daughter. At that time, two of her family members were in the process of being tested. During January 2016, she messaged me and let me know that the two candidates didn't work out.

That’s where my journey began. 

Mar 26

DeLana’s Story

Mended Little Hearts Coordinator Michele Bowers is a devoted congenital heart disease (CHD) advocate and a student pursuing a master’s in clinical mental health. Today, Michele shares her story of how Medicaid covered her daughter’s surgery and care to address a CHD.

3-26_DeLana_Bowers_photo.jpgBefore my daughter, DeLana, was born in 2014, I can honestly say that I probably didn’t really know what Medicaid was used for or who met the requirements. To be honest, I probably had a very skewed view of the population that Medicaid helps to care for. However, shortly after my daughter’s birth, we learned that she had a CHD.

My seemingly pink, healthy baby had a very sick heart that would need open heart surgery before she completed her first year of life. Most parents are sent home with well wishes for their new baby. We, however, were left with the terrifying words of advice to “call 911 immediately if she turns blue.”

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