Nathan's Story

IMG_7312.JPGIn honor of Month of the Military Child in April and Military Appreciation Month in May, 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 NICU. 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. 

Over the years Nathan’s medical needs, and thus his care, have increased and he now requires total care. He is non-mobile (unable to sit unassisted/walk/crawl), nonverbal and has a vision impairment. He has had several surgeries and has issues with almost every system of the body — from kidney disease to frequent broken bones. Nathan’s biggest medical issues involve his lungs. He has asthma, chronic obstructive pulmonary disease, interstitial lung disease and pulmonary hypertension. Nathan has an immune deficiency that requires weekly infusions. Since Nathan is homebound and can’t attend school, all of his therapies are done in the home. TRICARE alone doesn’t meet all of his needs.

We first found out about Medicaid being an option when we were stationed in Virginia and Nathan was about 5 — we heard that he could qualify for Medicaid through one of their waiver programs. Medicaid varies by state, so when we moved to Texas we got on the Medicaid Waiver lists here, but luckily Nathan was immediately able to begin receiving Medicaid services.

Since we moved to Texas, Nathan receives most of his care at University Health System Children’s Health in San Antonio. He also receives care at Dell Children's Medical Center of Central Texas, Methodist Children's Hospital of South Texas, and Children’s Hospital of San Antonio.

IMG_7873.JPGOutside of those hospital visits though, Nathan needs a lot of care at home. He receives some private duty nursing through TRICARE, but Medicaid supplements the rest and we receive additional hours of nursing respite from the Medicaid Waiver. Medicaid also covers an IPV machine for Nathan — it drastically helps cut down on his lung infections by helping him clear his secretions and open his lungs. This machine is critical because it allows Nathan — and us — to breathe easier.

These two programs function as a team for Nathan. Being able to access Medicaid through a waiver program is vital to Nathan’s health and to our family as a unit. The financial burden would be so much greater if we didn’t have Medicaid to help supplement our TRICARE. Nathan sees 15 specialists and is on more than 20 medications, plus has frequent hospitalizations.

Without the extra nursing provided by Medicaid, our family would have a totally different dynamic. Mom and Dad’s time is often dominated by Nathan’s care, but the nursing allows us to have moments where we are a “typical” family. We are able to get rest which allows us to be better parents to all of our children. Ultimately, we are able to keep Nathan in our home because we have help with his care through Medicaid.  

Nathan spreads unconditional love and humor to everyone who meets him — he has taught us so much. When Nathan was very young, we didn’t ask the sort of tough questions we needed to in order to better advocate for him, but he helped us find our voices so that we could use them for him. His strength and determination have gotten us through our darkest hours…we figure if he is still fighting then we should too.

Medicaid truly helps families like ours. The program helps families stay together by meeting the child’s needs at home instead of them having to be placed in an institution. Medicaid helps supplement services that TRICARE does not cover for military families….services that improve the quality of our son’s life.  

Showing 3 reactions

commented 2017-05-15 18:24:18 -0400 · Flag
This family has, through superhuman efforts, Tricare, and Medicaid, been able to assure that Nathan has remained in the home and been a vital family member. Nathan’s mom and dad…and his sister and brother…are all amazing people and could not have the care and coverage for Nathan if Medicaid was not available. We have to insist that coverage remains so that families like these…and there are many!….can maintain a semblance of normalcy in their lives.
commented 2017-05-15 15:40:32 -0400 · Flag
This is an amazing family that has fought tooth and nail to keep there family well and intact. Through them I know of many other families fighting the same fight. We must demand that these Medicaid coverages continue so these lives can continue
commented 2017-05-15 15:21:22 -0400 · Flag
What a powerful story of an extraordinary young man and his family. Thank you for sharing the importance of comprehensive coverage and the absolute necessity of Medicaid for children and their families to thrive!