Family overjoyed, thankful, and looking forward to the future

Amanda Langford is exhausted. Over the past six days, she’s slept sparingly; an hour here, an hour there, but no more as her mind races through the scenarios. As an advanced registered nurse practitioner, she understands the situation better than most and that’s both a blessing and a curse.

She’s a mom, after all, and that’s her baby — Gilbert Middle School sixth grader Zack Langford — laying in the bed attempting to recover from a surgery that saved his life. She worries. Constantly. Who wouldn’t?

“I can’t turn my mom mind off, so I keep problem solving,” Amanda says softly as she sits inside Children’s Mercy Hospital in Kansas City. “But we’re just so happy and so excited.”

The phone call that changed the life of everyone in the family came in at 1:32 a.m. on Friday, Dec. 30, just a few hours after the Langfords had celebrated Christmas at the house of Zack’s grandparents. It was a call that Amanda, her husband Troy, Zack, and younger sibling Zander, a Gilbert Intermediate fourth grader, had dreamed about. Had prayed about. So many times.

Zack was just hours away from getting his new heart.

“Our phone rang … and they told us they had a heart for Zack,” Amanda says. “I let Zack and Zander sleep a little bit, but then we woke up the boys and told them the news and Zack was just overjoyed the second we told him. And Zander’s first words were, ‘Mom, it’s a miracle. We’re in Kansas City and Zack is going to get a heart.’”

It was a long wait, nearly four years since Zack was first diagnosed with restrictive cardiomyopathy, a condition in which the muscles of a heart’s ventricles stiffen and are unable to fill with blood. It’s the rarest form of cardiomyopathy and it generally leads to the need for a heart transplant.

Zack was double-listed on the heart transplant list, both at Children’s Mercy Hospital and the University of Iowa, that’s how dire the situation was starting to become, as the Langford family first shared with us earlier this fall (to read that full story, click here:

Zack checked into the hospital at 7 a.m. on Dec. 30 and was taken to the operating room 13 hours later. His new heart arrived at 12:30 a.m. on Dec. 31. And at 12:31 a.m., just one day before the New Year, Zack officially was a heart transplant recipient.

“It’s the best gift in the world,” Amanda says. “We’re completely humbled that someone would share that with us. Someone had to go through a great loss for us to have ours and we don’t want to minimize that. We’re just so thankful.”

Amanda says doctors wanted the ischemic time — the time between the heart beating in the donor’s chest to the moment it began to beat in Zack’s chest — to be between four and six hours. Anything more than six hours is less than ideal.

For Zack’s surgery, the ischemic time was 3 hours, 52 minutes, something that brought both joy and relief to Amanda and Troy.

“That’s just phenomenal,” Amanda says.

According to Amanda, Zack has progressed nicely in the days following surgery. Still, the journey to recovery will be long. Zack remains in the ICU currently, but the family is hopeful he’ll move to the floor within the next few days. If all goes well, Zack will remain in Kansas City for the next four to six weeks, and Amanda says the family is hopeful Zack will be able to return to school following spring break in March.

“He will be out of school for about three months, and he’ll be on anti-rejection (medication) for the rest of his life, but he’s doing really well,” she says. “The (medical) team is happy with his progress and his heart looks really good on echo (echocardiogram). I don’t know if he can truly comprehend or process it yet, but he’s definitely excited and he told me yesterday that he can run faster than me now.”

Amanda says the last week has been difficult on Zander, who misses his best friend terribly. But he knows his older brother is on the mend.

“He’s so happy for Zack, but he misses him too,” Amanda says of her youngest son. “He’s staying with my parents (locally in the Kansas City area), but he’s come up every day except for one to see Zack.”

Above all else, the Langford family is thankful — for the donor, for the outpouring of love it’s received from friends and family, and from its Gilbert family, most notably Zack’s group of friends that FaceTimed him just prior to his surgery.

“Gilbert has reached out to us so much and the school has been amazing,” Amanda says. “His five friends FaceTimed him good luck and told him how brave he was, and that really encouraged him too. It’s a nice testament to Gilbert.”

Gilbert Schools wants to continue to support Zack and the entire Langford family throughout the coming months. On Friday, all students are asked to wear red in support of Zack, and we continue to share how you can help the family with its medical costs.

“I hope the family can feel our giant hug from Gilbert all the way to Kansas City,” Gilbert Superintendent Dr. Christine Trujillo says. “Zack and his family are very special and have been through so much, and our hearts are with them. We are all reading the daily updates on Zack’s progress (via the group Facebook page COTA for Heart Warrior ZACK), and I know the Gilbert community is joining me in praying for continued healing for Zack and peace for Zander, Amanda, Troy, and the doctors who continue to treat Zack.”

The Langford family began working with the Children’s Organ Transplant Association (COTA) this fall in an effort to fundraise to help cover Zack’s medical expenses. As of Wednesday afternoon, the family has raised $14,381 with a goal of raising $75,000.

COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars to support transplant-ready children and young adults. Every penny in donation made to COTA in honor of a patient goes to pay transplant-related expenses.

To support Zack and the Langford family with a tax-deductible donation, you can visit his COTA website: Simply click on the GIVE tab, enter your gift amount, and then scroll down and click on Zackary Langford.