Helping families at Levine Children’s Hospital

On May 4, 2023, our daughter Ryan had open heart surgery at Levine Children’s Hospital in Charlotte to fix an atrial septal defect and a ventricular septal defect. Her congenital heart defects were discovered during pregnancy, and the past two and half years have been a challenging journey filled with doctor’s visits, echocardiograms, and a trip to the ER. Despite it all, Ryan remained a resilient and cheerful toddler.

We are overjoyed to share that Ryan's surgery was a success, and the two holes in her heart were closed. Although her recovery was tough, we couldn't have hoped for a better outcome. Seeing our tiny toddler in the ICU, intubated and surrounded by machines, was overwhelming and heart-wrenching. Yet, Ryan's toughness shone through, and she was up and walking around the pediatric intensive care unit the day after surgery.

During Ryan’s recovery, she faced another setback known as Post-Operative Chylothorax, a rare complication that only occurs in roughly 2% of congenital heart surgeries. Over the following days, her dedicated care team tried multiple treatments, but unfortunately, none of them showed promising results. As a last resort, Ryan underwent a second surgical procedure. Despite preparing ourselves for another challenging day, we held onto hope as this treatment has a 90% success rate. However, a few hours later we learned the surgery had not been successful. The complexity of her lymphatic system made it too difficult to locate the leak. It was a tough moment, and we experienced a brief emotional setback. Nevertheless, inspired by Ryan’s resilience, we dusted ourselves off and kept going.

Even after a second procedure, Ryan continued to amaze us with her strength. She continued walking laps around the PICU floor, waving, smiling, and cheerfully greeting everyone we encountered. Her care team tirelessly researched medical studies and came across a drug that had shown promise for a few children with the same condition. When combined with a no-fat diet, this medication proved to be the turning point. After enduring 19 long days. Cheered on by the entire floor staff, Ryan finally rang the bell signifying her recovery, and we were able to return home. Exactly one month after her surgery, Ryan walked down the aisle as a flower girl at her aunt and uncle’s wedding. We were overjoyed to all be together.

As of Monday, July 31, her cardiologist gave us the incredible news that Ryan can stop all medications and now has no restrictions. This milestone marked the end of a challenging chapter, and we couldn’t be more grateful for the care and support we received from the medical team and everyone involved in Ryan’s journey to recovery.

Our experience at Levine Children's Hospital was both emotionally challenging and heartwarming. The care and compassion shown by the entire medical team, including the surgeons, doctors, physician assistants, and nurses, were beyond compare. Their dedication not only helped Ryan recover but also provided comfort and support to us during the most difficult moments. We will be forever grateful for their exceptional care.

Now that Ryan is home and finally recovered, we feel compelled to give back to Levine Children's Hospital, whose Pediatric Cardiology department is ranked 8th in the country. During our stay, we were the only locals on the PICU floor. Other families came from out of town or out of state and had limited resources during their stay. During our own experience, we were fortunate to have the “luxury” of going home to shower, sleep, and prepare meals. However, this wasn’t the case for the other families. Some days, the food cart for parents didn’t come by, leaving the snacks in the lounge as the only available free food option. The toiletry cart only visited once a day, and the sheets and blankets provided were standard hospital quality. To make a difference for these families, we reached out to Ryan’s PA, who shared the items that would have the most impact on their comfort and well-being. Blankets, pillowcases, toiletry kits, door dash gift cards, and cups with lids for the kids are some of the essentials that can bring a sense of relief and ease during their stay. Additionally, items like bubbles and pinwheels are beneficial for the kids’ airway clearance post-surgery.

With this fundraiser, 100% of the funds raised will be used to purchase these essential items for the PICU floor. The PA’s and nurses will be able to distribute them as needed, ensuring that each family receives the support and care they deserve during this challenging time. Your generous contributions will directly impact the lives of these families, bringing some comfort and joy to their stay at the hospital.

We want to extend our heartfelt gratitude to everyone who supported us during Ryan's journey and now is joining us in helping other families at Levine Children's Hospital. To show our appreciation, we will be hosting a barbecue on Saturday, September 16th, from 3-6 pm. Please stop by anytime for drinks and some of Alex's smoked ‘cue.

Thank you again for your kindness and generosity. We hope to see you at the barbecue.

Lots of love,

Alex, Kate, Spencer, and a healthy Ryan