Nothing can prepare you for learning that your child is critically ill. Ask Jennifer. When the health of her daughter, Kinsley Mae, began to decline out of nowhere, she had no idea the journey they were about to begin. Over the next few months, she would visit multiple cities, learn countless medical terms and turn her world upside down to get her daughter the care she needed. Here is her story in her mother’s words:
Kinsley Mae’s journey began in February 2020. She was diagnosed with parainfluenza. Months later, it seemed that she still hadn’t fully recovered. At the end of May, she had some blood drawn and it showed elevated numbers. She was placed on an antibiotic. Two weeks later, a recheck showed that her numbers had continued to climb. She was referred to a GI specialist for further evaluation. On June 5, we noticed some discoloration in Kinsley Mae’s palms. They were a bluish color so we headed to the ER at Children’s Hospital in Omaha.
Kinsley Mae was admitted to the hospital with a pulse ox level of 52%. The doctors and nurses were amazed that she was carrying on like normal and showed no signs that she was lacking oxygen. Over the course of the next week, she went through many tests. Doctors thought she had an immunological disorder such as lupus. She was transferred from Omaha Children’s Hospital via medical airplane to Children’s Mercy Hospital in Kansas City, Missouri where they felt she could receive better care.
The airplane was so tiny that we could not ride with her. Kinsley Mae took her first ever plane ride by herself. Her dad and I jumped in the car and made the three-hour drive to her, which felt like an eternity. We would spend two weeks there undergoing many more tests, including echocardiograms, ultrasounds, a lung biopsy, bone marrow aspiration, endoscope, heart cath, blood draws and more.
Finally, it was determined that Kinsley Mae had pulmonary arteriovenous malformations. Her arteries and veins have abnormal connections between them, so this explained her low oxygen saturations. We had no clue what was causing it. This led to our transfer to Cincinnati Children’s via medical jet so she could get the best care. Fortunately, Kinsley Mae’s dad was able to ride with her on this trip and I returned to Nebraska to pack. I drove straight through to Cincinnati and made it in 12 hours.
When we arrived in Cincinnati on June 24, 2020, we were thinking a lung transplant was in our little girl’s future. However, on August 5, she had a test done to check the portal vein pressure of her liver. The results came back that this pressure was three times what it should have been. Never did we imagine that this would be an issue.
Kinsley Mae was listed for a liver transplant on August 13. We received the call just seven days later that a liver had been accepted and that she would have transplant later that day.
This was so fast; we felt both blessed and scared at the same time. With her compromised lungs and oxygen issues, the transplant had additional complications for her. Fortunately, it was successful and being the fighter she is, she shocked and amazed the team throughout her transplant.
We have had a few bumps in the road, but we had a huge turn-around on September 5, which happens to be her birthday! She began getting up and her oxygen was weaned down a liter for the first time since transplant. We were so excited. On September 13, she was moved out of the PICU. Then, on September 18, she was discharged to the Ronald McDonald House. The following week she was readmitted for some elevated numbers and another procedure was performed. She spent a week inpatient this time.
We are back at the Ronald McDonald House and she is so glad to be back! She loves the freedom of moving about in the room, the food, our daily walks around to see what is going on, not to mention the friendly greeting and conversations with the staff here. We are hopeful that her numbers level out and that we can make our long journey back to Plattsmouth, Nebraska in the near future. This is our story thus far and we are so happy to have found the Ronald McDonald House!
Kinsely Mae’s smile brightens our day, despite what she is going through. You can make a difference for children like her with a donation today.