A Miracle For McKinley – Journey For A New Heart

By CHARLENE PAUL

Moapa Valley Progress

McKinley Nilson was like any other little person. She loved listening to her mother’s voice, and she laughed at her older siblings. She occasionally caught a cold and suffered from the usual illnesses that little people get.

But one day in March, she ended up in the emergency room struggling to breathe. From there, she was transported to Primary Children’s Medical Center in Salt Lake City where her condition continued to deteriorate. Enduring tests, scans, blood work, tubes, wires, and monitors, McKinley’s team of ten doctors worked feverishly trying to figure out what was going on. They discovered her heart was enlarged and she was fighting two serious viruses. She was also in acute heart and kidney failure. She was placed on a ventilator and admitted to the ICU. Her parents’ worst nightmare was being realized as they watched their toddler fighting for her life.

McKinley’s parents, Brian and Ruth, are described as the kindest, most generous, and service-oriented people. Brian is a diesel technician and serves in the National Guard. He has been deployed once to Kuwait. He also serves his community as a volunteer firefighter.

Ruth worked as a CNA part-time at Seasons of Santaquin. She takes great care of McKinley and her three older siblings. She has been at her daughter’s bedside since the beginning of this ordeal.

The illness that caused McKinley’s heart problems is known as fifth disease. It is caused by parvovirus B19 (different from parvovirus that affects dogs) and is usually a mild respiratory disease. However, in McKinley’s case, the virus seriously damaged her heart.

A few weeks after being admitted to the ICU, Brian and Ruth spoke with one of the doctors who explained that McKinley would need open heart surgery to place an LVAD/Berlin Heart Device. He told them he had performed this procedure on patients as young as McKinley, but nobody has ever come off of that device at Primary Children’s Medical Center without needing a heart transplant. To say they were shocked would be a gross understatement. Until this point, they thought she would be able to get better while she was on the LVAD and then come home. But they put their faith in God and told the doctor to do what needed to be done. She had the surgery on March 26. And the wait for her to get stronger in order to receive a heart transplant began.

About a week after her surgery, McKinley smiled and was excited to see her parents and siblings when they came to the hospital for a visit. “It always brightens our day when she is so excited,” said Ruth.

She works every day with an occupational therapy, physical therapy, and speech therapy. By the time afternoon rolls around, she is worn out.

Brian was able to hold her in his arms about a week after the surgery. “She looked so comfortable in his arms,” Ruth said. “She fell right to sleep. I think both of them needed this moment together.”

One of the cardiac transplant doctors explained that the transplant team decided they could give McKinley until the end of the month to see if her heart can recover and regain total function on its own. If it can’t by that time, they will change her status to the highest on the transplant list.
“Now, of course, we are still holding on to the small chance her heart can recover,” Ruth said. “It’s hard to pray for your daughter to be able to get a new heart knowing what would have to happen for her to get one. But we will hang on to hope that we won’t have to go that route.”

On April 23, Brian and Ruth received some very positive news. McKinley’s doctors said they feel okay giving her a little more time to continue to heal. They believe her heart is improving, and her risk of another stroke is minimal. They will get an echocardiogram every two weeks for the next month or two to see if her heart is making improvement. After three consecutive good echos, they will do a series of tests to see if her heart can handle the extra stress being off the Berlin heart would create. They will reach out to other hospitals who have had success with taking out the LVAD in order to learn about the process and what to expect.

“Of course, this all could change if something started going downhill,” said Ruth. “If that happens, we will deal with it then. For now, we couldn’t be happier with this news.”

As you can imagine, the medical bills and other expenses at this point are astronomical. Ruth’s sister, Rebecca Muhlestein of Overton, and her family, are sponsoring a car wash on May 5 from 9:00 AM to 1:00 PM in the Lin’s Market parking lot to help lighten this load.
“There are two ways you can help,” explained Rebecca. “You can come and have your car washed, or you can volunteer to wash the cars. You could even do both!”

For more information on how you can help in McKinley’s Journey for a New Heart, call or text Rebecca at 702-377-9662. All funds will go directly to Brian and Ruth to help offset the medical expenses. Bring your cars, trucks, and vans and help out this very worthy cause.