May 29

Cole's Story

In honor of Military Appreciation Month, Speak Now for Kids is highlighting some very special families. Most military families get all of their health care through the military insurance program known as TRICARE. However, the families highlighted in this series have a child with complex medical conditions who also relies on Medicaid — a program that covers more than 30 million kids nationwide.

Today, we’ll be hearing from Cole’s mom, Stephanie….


Being a military spouse means that you are supporting a mission that extends beyond yourself and your family, and that role can result in unexpected twists and turns. Through my 13 years as a Marine Corps spouse, I’ve lived amazing places, met incredible people and made wonderful memories.

This life has also been accompanied with challenges. During a combat deployment in 2011, my husband and I experienced our biggest challenge to date. Our 2-year-old son, Cole, was diagnosed with an incurable genetic disorder called spinal muscular atrophy at Children's Hospital of the King's Daughters (CHKD) in Norfolk, VA.

May 23

Part 2: Justin's Story

Cristi and her husband are parents to two special kids. One of their children, Justin, requires a lot more health care services than the other though due to complicated medical conditions. While the family has TRICARE coverage through Dad’s military service, Justin also qualifies for Medicaid because of his special needs. Yesterday, Cristi talked about Justin’s birth and some early struggles with insurance. Today, she’ll talk more about Justin’s life now and how Medicaid helps their family.


I do not get to stop at “mom” — I have also learned many nursing skills. Since I am blessed to be a stay-home mom, we do not receive extra home-health nurses except for sleep hours. Justin’s first few years were the hardest, as he was on the ventilator 24/7. He has a trach, or tracheostomy — a tube in his throat to connect the ventilator to — but needs daily care such as suctioning the mucus to keep it clear. Each day was a blur of reconnecting his ventilator as he learned to move, suctioning his trach, juggling medications, trying to keep him alive.

Today, a typical day for me starts with the night nurse leaving at 6:30 a.m. When I wake him, he requires three breathing treatments and eight medications. Since he’s been able to come off the ventilator during the day, I change that to just oxygen connected to his trach. In dressing him for the day, he also needs braces for his feet and calves. Throughout the day, he needs constant watching (for color, breathing patterns and oxygenation). In the evening, it is another batch of breathing treatments, more medications, and switching him back to a ventilator.

May 22

Justin’s Story

In honor of Military Appreciation Month, Speak Now for Kids is highlighting some very special families. Most military families get all of their health care through the military insurance program known as TRICARE. However, the families highlighted in this series have a child with complex medical conditions who also relies on Medicaid — a program that covers more than 30 million kids nationwide.

Today, we’ll be hearing from Justin’s mom Cristi…


Before Justin arrived, we had a healthy 4-year-old and were excited about our second child. Due to a long deployment, we’d “planned” to have our second a lot sooner, but were glad to know Dad wouldn’t be deployed again for a good while. We also loved the base and the town and were planning to finish his Air Force career and stay there.

Justin was born in Minot, North Dakota six weeks early. My water broke early, right after an appointment that showed I was measuring too large and had an extreme amount of fluid. My last memory of being pregnant was a moment of intense pain and a doctor yelling “Let’s go, we’re losing them both!” After an emergency c-section, I woke to a nurse telling me Justin was being flown to Children’s Hospital & Medical Center in Omaha.

May 19

Meet McKinnley

McKinnley was born eight weeks early and diagnosed with transposition of the great arteries, an incredibly complex heart defect. At only two hours old, she underwent her first procedure to stabilize her heart. Bonding with her mother in the above photo, McKinnley is assisted by feeding and breathing tubes. To survive, she needed another surgery. But weighing less than 3 pounds, McKinnley would first have to grow stronger and put on weight.

SNKF_photo_McKinnley_II.jpg

Ounce by ounce, McKinnley grew. In the above photo, she is two months old and held by her father just before she undergoes a nine-hour open heart surgery to restore her aorta and pulmonary artery connections. The wires on McKinnley’s head are in place to monitor for seizures, which is standard practice for babies undergoing heart surgery.  

May 15

Nathan's Story

In honor of Military Appreciation Month, Speak Now for Kids is highlighting some very special families. Most military families get all of their health care through the military insurance program known as TRICARE. However, the families highlighted in this series have a child with complex medical conditions who also relies on Medicaid — a program that covers more than 30 million kids nationwide.

Today, we’ll be hearing from Nathan’s mom, Adreanna….


Our oldest son, Nathan, is 17 years old and has a rare chromosome disorder. As a result he has a profound intellectual disability and is considered medically fragile. When Nathan was born we were expecting a “healthy” baby boy. It was immediately apparent that Nathan needed extra help and he was transferred from Eglin Air Force Base to a larger hospital that had a N

ICU. He spent a total of three months in the NICU and it was there that we learned about his disorder — unbalanced translocation. We were young, first-time parents and were devastated. 

May 04

Catching Mental Health Issues Early Can Change a Child's Life

Leading up to Children’s Mental Health Awareness Day Children’s Hospitals Today  published an article about the Children’s Hospital of Orange County (Calif.) and the initiatives they are undertaking to improve pediatric mental health services.


A picture of pediatric mental health

  • One in five young people in the U.S. has a diagnosable mental health disorder
  • Half of people with lifetime mental illness symptoms by age 14
  • Suicide is the second-leading cause of death in children ages 10-24

Source: Children’s Hospital of Orange County


 

Apr 17

“I spent my childhood on Medicaid”

For this week’s Medicaid Matters for Kids’ Mondays, Speak Now for Kids spoke with The Washington Post’s Michelle Singletary about her recent newspaper columns on the importance of Medicaid in the lives of children.


As the discussion about health care continues on Capitol Hill and in the media, the role that Medicaid plays in the lives of children seems to have gotten lost in the fray. Described as a “vital lifeline,” Medicaid ensures over 30 million children who are receiving health insurance coverage that meets their unique needs.

In an effort to bring a face to this debate, Michelle Singletary, a nationally syndicated columnist for The Washington Post, publicly shared her very personal story about growing up with Medicaid health coverage while living with her four siblings and grandparents in Baltimore, Maryland. 

Mar 29

A Mother’s Perspective - Pediatric Kidney Disease

My daughter has cancer.

I never thought words like that would ever enter my mind, but when Hannah was about 13 months old something wasn’t right. One side of her stomach was bulging. A visit to the pediatrician resulted in a trip to the hospital – Do not pass go and do not return to your previously normal life.

Mar 14

Are Teenagers Replacing Drugs With Smartphones?

Amid an opioid epidemic, the rise of deadly synthetic drugs and the widening legalization of marijuana, a curious bright spot has emerged in the youth drug culture: American teenagers are growing less likely to try or regularly use drugs, including alcohol.

With minor fits and starts, the trend has been building for a decade, with no clear understanding as to why. Some experts theorize that falling cigarette-smoking rates are cutting into a key gateway to drugs, or that antidrug education campaigns, long a largely failed enterprise, have finally taken hold.

But researchers are starting to ponder an intriguing question: Are teenagers using drugs less in part because they are constantly stimulated and entertained by their computers and phones?

Mar 14

Dear Ivanka, Let’s Talk About the AHCA.

Dear Ivanka,

Hi. My name is Kyla. I live in Texas. I am married to a great guy who works in IT and we have three kids, two of whom have medical needs well beyond the typical ear infections and viruses of childhood. They have major medical conditions that will follow them for life. I’m writing you because I’m told that you are a champion for women and families, and we need a champion right now. I’m also writing you because I’m told you have your father’s ear, and maybe you have the power to turn the tide for families like mine. I hope you do.

I need to talk to you about the proposed AHCA and per capita caps for Medicaid. I understand that you are probably frustrated with the ACA, as many are, and I can see that it is far from perfect. In fact, my husband and I are both uninsured because we fall into the gap between being eligible for Medicaid and affording a Marketplace plan (even with a subsidy) like roughly 29 million other Americans. I agree that IS a problem! However, the AHCA does nothing to rectify this situation, instead it compounds it. If my husband and I were to get seriously ill, we *might* be able to scrape together the money for coverage with the ACA, but with an additional 30% charge for an entire year as the AHCA proposes, it would be permanently out of reach. Can you imagine if the fire department told people, “You should have called us before your house was on fire. We are going to charge you a premium surcharge because you’ve called us for rescue now that you need it.”? If one of us gets seriously ill, we would have to seek care at a hospital and it would result in bills we cannot pay. The cost of uncompensated care is shared between property taxes and increased costs to insurers (which are passed on to their customers), and it costs taxpayers much more than preventative care and out of hospital treatment. This fact seems to be overlooked in most conversations about providing people with healthcare, because the truth is we are ALL already paying for it. At this point, we are just providing people with lower quality care for higher costs and causing bankruptcy for many of our citizens. It hurts our economy and it hurts families and individuals. We can do better. I hope you’ll help me to tell people that we can, and should, do better.

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