Addysons journey

On October 7th, 2009, I welcomed a beautiful blue eyed baby girl into the world. This miracle was given the name of Addyson Gray Lockwood, and from the moment I laid eyes on her, I was in love. Although I had been forewarned via ultrasound photographs and extensive testing that Addyson suffered from a rare birth defect, nothing could prepare any of us of what was in store. Addyson was born with Gastroschisis, essentially meaning that the contents of her abdomen was exposed to the external world. Specifically for Addyson, a large amount of her small intestines were protruding and had suffered significant damage due to the prolonged exposure inside my womb. Immediately following her birth, Addyson was rushed into surgery in an attempt to restore her intestines back inside of her abdominal cavity. Unfortunately, this emergency surgery did not go as planned and Addyson experienced her first set back. During Addy’s surgery, it was discovered that her intestines had suffered much more damage than originally thought and because of the numerous obstructions and unrepairable damage, the surgery was a failure. Addyson was placed in the Neonatal Intensive Care Unit at Duke University Hospital while her doctors constructed a plan that would presumably yield the most benefit. The next couple of months were very difficult for baby Addyson and she endured multiple surgeries. At six months old, we received the news that we had been so desperately waiting to hear. Doctors decided that in order to save Addyson, she would need to receive a small bowel, liver and pancreas transplant. This decision would counteract and replace her current situation in which she primarily depended on TPN and lipids as a means of nutrition. However, in order for Addyson to receive this blessing, she would have to be placed on a rather lengthy waiting list. In the meantime and after staying at Duke for eight months, we were sent home. This transition didn’t come without a cost. Addy remained attached to an IV, a drain was placed in her liver, and she relied on a feeding tube in addition to a large amount of medicine. On August 4th 2010, we finally received the long awaited call. Addy was going to receive her organs! So of course, we rushed back to the hospital in order to receive her transplant. The transplant took approximately 8 hours to complete but thankfully, the doctors were very hopeful that this transplant would resolve all of her problems. Unfortunately, many weeks passed and Addyson did not improve. Instead, she only got worse. All the preventative measures and test seemed to return normal although Addy’s worsening condition indicated that something was indeed wrong. Because of Addy’s deteriorating condition, they decided to take her back to the operating room to do a washout and explore. As soon as they reopened her wounds, they once again found a hole in her small intestines. The wound was leaking bile into her abdominal cavity and surrounding organs. This was the culprit that was causing her to be so sick. The doctors repaired the hole but they could not seem to get Addy to breathe on her own. Because of being sedated for almost four months, Addy was given a tracheotomy to help her lungs to continue to breathe. After what seemed like forever, Addyson began to improve although her small bowel was still not working, as it should. It seemed as if Addyson was fighting a losing battle and after much contemplation and review of her present status, the decision was made to relist her for yet another small bowel, liver, and pancreas transplant. Again, we were sent home in late January of 2011 with the same materials as the previous time with the addition of an ostomy bag and a drain placed her stomach. The wait was on, once again. On June 27th 2011, we received a familiar phone call and atlas, it was time for what we thought would be her last transplant. The surgery took approximately 11 hours and the doctors’ reassured use that everything went great. After about a month of recovery, Addy was doing well enough to return home. Although we knew she still had a long road of recovery ahead of her, she was finally on the path to living a normal life. Addy was finally eating real food for the first time as well as did not have any IVS! She continued to have a feeding tube, which was used for medicine and additional food to help her grow and supplement her minimal cravings while she continued to adjust. Also, she continued to have her ostomy bag for a year so they could continue to monitor her bowel and bile as a preventive rejection mechanism. Nonetheless, this was a welcomed achievement and we were so blessed to have her home and doing the best she could, given the circumstance. On Oct of 2012, she had one last surgery to reverse her ostomy bag, which went amazing. Addy was released after five days and we were convinced that this rollercoaster ride had finally reached its end! We anxiously waited weeks, and that anxiety soon dissipated into comfort as those weeks turned to months and those months turned to years. Addy had finally left all of the trials and sickness behind her and had instead adopted this new healthy and seemingly normal life! Although Addy did have to travel back to Duke for a couple minor stays such as dehydration, she was for the most part relatively healthy. Addy acquired a love for going to the beach, playing outside, getting absolutely dirty and even played T-Ball for the first time! She was meeting new people, hitting important milestones and even began to look forward to beginning kindergarten the fall of 2015. Regrettably, Addy fell gravely ill and on June 1oth 2015, we headed back to Duke to receive treatment for what was presumed to be a small, curable virus. Little did we know that our lives were about to be flipped upside down and turned inside out. Following numerous tests, everything checked out fine and we were discharged. The following Friday, Addy went to spend some time with her father and sister but she unfortunately awoke the subsequent morning very sick. Because Addy could not walk nor keep anything down for a couple of days, we packed up and headed back to Duke for a follow up. During this trip, the doctors completed more comprehensive testing as well at a CT scan. It was concluded that Addy had a small hole in her intestines that would require minimal surgery. So off to the operating room Addy went but after hours of waiting, I became rather anxious. That is when the doctors came to deliver the horrific news. They believed that in the time between the CT scan and the trip to the operating room, a blood clot had formed in her small bowel essentially causes all blood flow to be blocked. This blockage caused the organ to die off and the doctors had no other option than to remove it from her abdominal cavity. Her life changed completely from how she knew it. As if following a cruel and unfortunate pattern, Addy would need yet another small bowel, liver and pancreas transplant, making this her third. However, Addy could not be relisted until she became healthy enough so we were discharged after two months and sent home with all the necessary tools to make this happen. On her 6th birthday October 7th, 2015, Addy was allowed permission to be relisted on the transplant list. This was a blessing to us all and further highlighted the fact that people tend to take for granted what they have. Now we play the game that we have become all too familiar with-the waiting game. Since her last surgery in June, Addy has not been able to consume any food but has instead become incredibly dependent on TPN and Lipids as means of nutrition and survival. As her mother, I have to play nurse, making sure her IVs are properly placed, drains securely fastened (all three of them) as well as administer her numerous medicines and shots. Relatively speaking, Addy has been admitted back to Duke eleven times, with four of the eleven times requiring stays in the PICU and being placed on breathing tubes. Despite the many hospital trips, stays, medicines, needles and everything in between, you hardly ever see Addy lose her positive attitude. She faces each new day with a beautiful smile and a heartwarming laugh. She is feisty, yet sweet, sassy, and yet strong. Without even realizing it, Addy inspires others and is such a strong influence on her loving family. Regardless of her apparent limitations, Addy works hard each day and doesn’t let a silly drain or IV keep her from being a normal child, within reason, and working to achieve her dreams!