A link to Caring Bridge which continues to blog Dyllan’s story:
Above: “heart spiral” painted by Margaret Lindsey
Photos: Dyllan Wicks, Dyllan, mother Dayna, father Scott and sister Aliya, Big sister Aliya and Dyllan.
Please read Dyllan’s whole story.
Dyllan’s Story
Dyllan was born February 21, 2010 without any complications, and we were thrilled to bring home our healthy baby girl! Starting at 6 weeks of age we began taking her in for weekly visits and monitoring as her doctor was not pleased with her failure to gain weight. At 3 months of age things had still not improved. One morning, Dyllan started to show some increased signs of sweating and a little difficulty breathing. We were going to take her to a local clinic, but did not feel good about it and decided to go straight to the ER, a decision that helped save her life. During the stress of the ER her little system crashed and she was rushed into the ICU. She was diagnosed with a rare heart condition (literally one in a million) named Left Ventricle Non Compaction Cardiomiopathy. We were sent to a small room outside of the brightly lit ICU room with its team of people tending to Dyllan. The Chaplain of the Hospital had been called in to “be with us” as the Attending Physician told us she probably would not make it through the night. It was like being hit by a fast moving train and we could barely keep our balance.
It was a very long night, but she made it through. We spent 10 long days there learning what our options were, and to see if she could stabilize. It seemed a heart transplant was the only option for her to continue life. There is so much that goes into a decision of this magnitude, but we decided to keep moving forward letting her guide our way; to let her show us that she really wanted to stay in this life. On the 11th day, we were medically transported to Lucille Packard Children’s Hospital at Stanford. In making these decisions one never knows which way the road will lead and, unfortunately, Dyllan has had one of the roughest journey’s her doctors have ever seen. It is a miracle that she is with us now. We were in the hospital for 9 months total and most of that time was in the CVICU. We spent everyday commuting an hour drive each way back and forth to the hospital, while trying to maintain a somewhat stable routine for Dyllan’s older sister, Aliya, then 4 years old. During her entire 9 month stay we were able to have a family member or friend (if mom or dad could not be there) 24 hours a day 7 days a week. We wanted her to be provided with constant emotional support as well as keep an eye on her complicated care. It is amazing that our loved ones took time out of their lives to support Dyllan and our family throughout this entire process. The nurses got to know the “changes in our shifts” as well as we got to know theirs.
Dyllan was put on the donor list August 6th, 2010. By the end of August, she had to be placed on two external heart pumps called Berlin Hearts because her heart was failing fast and she hadn’t had her transplant yet. These required separate open-heart surgeries to install each pump (to take the place of her right and left ventricles) and are filled with many complications, but the goal and hope was to buy her time for an appropriate donor heart to become available. Several times each day, the nurses would check the pumps to see if there were any clots forming or if any had gotten dislodged into either her lungs or her brain. She had to have the pumps changed out twice due to clots forming, a procedure that meant her heart was taken “offline” for the few minutes it took to change the pump. She was lucky that only one clot got released into her right ventricle, which went to her lungs as well as a small clot into her left ventricle, which could have gone to the brain, but did not. Neither caused any major damage. Dyllan touched death more times than we care to remember. She “crashed” and was “brought back” many times by an amazing team of doctors. To their surprise she continued to hang in there.
On October 17, 2010, Dyllan’s heart arrived after 3 months of waiting and she was rushed into surgery. The transplant surgery took over 12 hours and was filled with un-explainable complications. Six hours into the surgery we were told that it did not look like she was going to make it through the surgery. There was no venous return from the lower organs in her body causing massive swelling and had to be opened from her chest down past her belly button to relieve the pressure. She had experienced what they call abdominal compartment syndrome. Her intestines then had to be placed outside of her body because the swelling was so severe there was no room for them inside her little body. The doctors still do not know why this happened. Once again, Dyllan made it out of surgery but was barely alive and open from just below her neck to past her belly button. The doctors told us they did not know if she would make it through the night or the next several days. To everyone’s amazement and relief she continued to hang in there. It took about 3 weeks and 3 different procedures to slowly close up her belly and begin the very long process of healing.
It was horrific to see her after her transplant surgery. She was barely alive, swollen unrecognizably, with a gaping hole from the base of her neck to past her belly button and petechial hemorrahaging over her entire body. Her intestines were the size of a small football and sitting outside of her body. She had over a dozen IV medications going into her. We truly believed at that point we had gone too far and should not have agreed to the transplant. We wanted her unimaginable suffering to end. We were told she needed close monitoring, and that she was by far the sickest child in the unit. It was hour-by-hour, day-by-day, and to all of our amazement, she continued to fight for life and hang in there.
There continue to be ups and downs mainly from the complications during her transplant surgery, but her new heart has been working great. We have had 3 heart biopsies since her transplant, regular echo’s, labs, and clinic visits. Her new heart is doing FANTASTIC!
Dyllan finally returned home in February 2011, 3 days before her first birthday to join Aliya whose world has also been turned upside down throughout this process. We were graced and held by a beautiful community of friends and family that helped in so many ways. It is a miracle we were able to bring Dyllan home and, at times, I never thought that day would happen. She was on a very grueling medical schedule with medications every three hours around the clock, in addition to weaning her from all of the narcotic painkillers she was on without sending her into withdrawal symptoms. Step by step she began to improve. She receives weekly Physical Therapy and Occupational Therapy and is “scooting” across the floor now, standing with help, babbling, and generally very happy. Her biggest challenge currently is learning how to eat and swallow again. Because she has had an NG tube since she was 3 months old and was intubated so many times and for such long periods each time, she forgot how to suck and swallow. At the end of September 2011, we finally decided that we needed to get the tube out of her nose and have a g-tube surgically placed into her stomach to provide her feeds. We hope that this will improve her wanting to eat, her overall health, and that we can remove the g-tube soon.
Dyllan currently requires a fairly high level of care with her recovery because of her OT, PT, feedings, and medications. Since she first went into heart failure, Dayna needed to stop working and tend to her and has not been able to go back yet as she is her main caregiver. Dyllan
is making great strides, but has a long way to go still.
We said goodbye in so many ways over the course of these very long months, and have prayed daily that her suffering would end. We are learning how to open our hearts more fully and embrace this incredible spirit who against all odds continues to choose life. We have witnessed her open so many hearts and touch people’s lives in ways we never could have imagined. We watched the doctors and nurses step up to a very high level of care needed physically, emotionally, and as a team with our family in decision-making. In such a short time, she has already made a profound imprint.
We are looking forward to much calmer waters for Dyllan and our family. We do not know what tomorrow may bring, and just try to enjoy each moment, each day, with the profound realization of how precious life truly is.
Dyllan’s website:
