Surgery Number 5

On Friday, October 8th, Kelsey was removed from the bypass machine that had kept her alive and on Monday, October 11th, Kelsey's chest was finally closed. She did remain, however, on an external pacing device, her heart was in complete block and unable to pace itself. Another week would go by with no improvement. Kelsey’s heart wasn’t responding. As devastating as one could imagine, the decision was made; Kelsey now needed a permanent pacemaker inserted. This meant back to the OR, back on the ventilator, back on the paralytic drugs and yet once again, opening Kelsey’s tiny little chest incision. The operation was successful, but so fearful of infection, Kelsey’s surgeons kept her on three IV antibiotics.

Kelsey has been on so many drugs, she’s not the vibrant, active 16 month old, they once knew. John and Lisa haven’t seen their little girl smile or laugh in over a month. They have not left the hospital in all this time, months of stress, anxiety and disappointments. They have been Kelsey’s advocate from the very beginning. They have stayed strong for her. Even when they feel like they cannot go on any longer. When they want to give up, when they are just too tired and exhaustion takes over their bodies and minds. They just look at this precious little girl who is their prize fighter. Kelsey will not give up, and they are her biggest fans!

Kelsey's 4th Surgery

On Tuesday, October 5th, a smiling blue-eyed Kelsey made her way to the operating room again.  Her surgeon felt confident that her heart had grown enough to fit the smallest mechanical valve that was available.  A tiny valve measuring only sixteen millimeters. After ten hours of surgery and with a new mechanical valve in place, the cardiac surgical team prepared to take Kelsey off the heart lung bypass machine. After ten hours of surgery and after three open heart surgeries in four months, Kelsey's heart failed to start. The surgeon said her heart was “just too tired.” It was decided to keep her on ECMO (which is similar to bypass, in which it mechanically does the job that the heart and lungs do but are unable) for a couple of more days to give her heart a chance to rest. Kelsey was placed in a medically induced coma and everyone held their breath as they watched Kelsey fight for her life. 

Once again, John and Lisa feared for their baby’s life. The day after her replacement valve was inserted, her heart continued to bleed and wasn’t healing. The tiny child lay in the ICU with her chest left open and visible from the surgery. She was on a heart lung machine, and her blood everywhere. The baby had tubes coming out of her everywhere. Some tubes were filled with blood draining from her chest. Others were transfusing her just as quickly as it was coming out. Blood was trickling down her little arms that didn’t get to clap on her first birthday, running down her legs that hadn’t taken their first step yet. It was a horrific sight. She lay with a thin layer of gauze protecting her open chest hooked up to a machine that was doing the job that her tired little heart just couldn’t do anymore. The surgeons came into the ICU to attempt to locate the vessels that were bleeding, right there at her bedside. After hours that seemed like days, the surgeons approached the terrified parents this time with good news, they located the bleeding vessels and sutured them. The bleeding had finally stopped.