Liver Transplant: Ezekiel's Story
The following article was written by Michelle, the mother of UW Hospital and Clinics liver transplant patient Ezekiel.
Ezekiel was a normal, playful 2-year-old boy until the day I happened to notice that the whites of his eyes were a yellowish color. I took him to the emergency room, just to have someone take a look. I never knew that that moment was the start of a big tragedy that would change our lives forever.
The doctors told us that some of Ezekiel's liver function tests were abnormal, and they kept him overnight to see if the numbers changed by morning. Morning came, and things were worse. There wasn't anything they could do for him and all we could do was wait to see if his numbers got better. They took blood from him three times a day to check his liver numbers, and put a PIC line into his heart in order to draw blood more easily.
We were so scared. Every day Ezekiel got sicker and sicker. It got to the point that he wouldn't even get out of bed or eat anything. He had a feeding tube in his nose to give him all the nutrients he needed, and after about a week of seeing him like this and watching his liver function tests get worse and worse, they told us that our son was going to need a new liver.
No one knew how much time Ezekiel had to live, and the team needed to work fast to find an organ donor for him. The feeling we had at that moment was indescribable. We were helpless. It was all one big nightmare, and we just wanted to wake up. Ezekiel was as healthy as could be before. How could this all be happening to him? There was no explanation to anything, but all we knew that we had a lot of hoping and praying to do. We prayed for a donor somewhere out there to save his life. We could not imagine life without our little Ezekiel.
We stayed at the hospital with Ezekiel since he first got sick, and my husband and I were physically and emotionally drained. We barely slept, because all we could do was think about getting a donor for our son. Meanwhile we had a little baby at home that we had not seen for a long time. We had to have someone take care of our daughter during this terrible time, and we were missing a lot of new things she was doing. It was so hard, and we were so exhausted.
After about 24 hours on the transplant list, the team came to tell us that they had found a donor for Ezekiel and that they would be taking him for surgery very soon. They told us that because of Ezekiel's young age, he would probably be up and running around within three to five days. We were so happy! Our prayers were finally answered! Our son was going to get a new liver and we were going to be a happy family again.
The doctors completed the transplant, but things did not go as anticipated. When they brought Ezekiel out of surgery, he was on a ventilator that was basically breathing for him. My heart melted to see him like that. The doctor told us that he wasn't sure if the liver was working, and that we had to wait a while to see what happened.
The very next day Ezekiel had to be put back on the transplant list for another liver. He just wasn't getting any better. It was so hard to see him how he was, looking so lifeless. It was like we were watching him die. As his mother, I just wanted to take all the tubes and wires off of him. I would have switched spots with him in a heartbeat. I kept thinking, "He is my life, and I don't want life without him."
Miraculously, they found another organ donor within 24 hours, and they worked quickly to do his second transplant. I don't think we felt as much hope the second time. We saw the process fail once, and we couldn't understand why the second one would work after the first didn't.
When Ezekiel came out of his second surgery, we still didn't know if it was going to work. His kidneys had shut down, and he was on dialysis. He had fluid between his lungs and his chest and they had tubes on each of his lungs to drain the fluid. All his organs were slowly dying. They checked his liver function tests daily, and it took a while to see any progress, but finally the numbers started looking a little better. He was getting better very slowly, but we had all the time in the world to wait for him. We prayed to God millions of times every day, and we know he heard our prayers. He was saving our baby.
After a few weeks, Ezekiel was doing a lot better and they wanted to take him off the ventilator and start to wake him up. I will never forget that day. My little angel opened his eyes and looked at me. That was the best feeling in the world. We had a lot of work to do, but we didn't have to be afraid for his life anymore. Ezekiel had to learn to walk, eat and talk and even to stand up again.
His body was so weak. We then knew that it was all just a matter of time for him to gain his strength back and be able to do all the things he was able to do before. We were so grateful to all the wonderful doctors that worked on him, and the dedicated nurses that took care of him day and night.
Ezekiel is now 10 months post-transplant, and he is the happiest little boy alive. He's too young to understand what happened to him, but he knows he's special and he's ever so proud of his scars. He is 100 percent back to being our little energetic boy. There is not a day that goes by that I don't think about everything, and I thank his donor from the bottom of my heart for saving my baby boy.
Someday Ezekiel will have a big story to tell, and he was so lucky to have such a miracle happen to him. A part of his donor lives on inside of him forever, literally, and that is the most beautiful thing in this world. Organ donation gives people a chance to live again. It gives people a new outlook on life. I've never appreciated life as much as I do now. This person that lives on in our son is his hero. We love this person without knowing them, and our son is living proof that life goes on.