We were excitedly awaiting the birth of our first child. With 9 weeks left, my water broke unexpectedly and my oldest son, Alec, was born prematurely at 31 weeks gestation via C-section. He was perfect. He received APGAR scores of 8 and 9, respectively. He was breathing on his own and was doing extremely well for his level of prematurity.
On his second day of life, however, he began to throw up bile, which prompted the doctors to order a test called an upper and lower GI. This test looked at the patency of Alec’s intestine from above and below. Unfortunately, this test showed that there was some type of blockage within his intestine. Within a very short time, Alec was taken to the operating room and was found to have extensive amounts of dead intestine, which was removed at that time. He went back to the OR later that day, at which time even more intestine was removed. The surgeons said that there was still quite a bit of injured bowel, but that they were hopeful that it would recover. Over the next week or two, Alec was taken back to the OR at least every other day for removal of more and more intestine.
Alec spent the next 6 months of his life in the NICU at Primary Children’s Medical Center. He continued to have issues with his intestine. He would get strictures (scar tissue) that would need to be released, which involved many more surgeries. He also had many episodes of sepsis with multiple different bacteria. Needless to say, our life revolved around the hospital. Because his intestine was still so sick, Alec required TPN (IV nutrition) in order to grow. Unfortunately, the TPN, his premature liver, and multiple infections caused him to get what is called TPN cholestasis, which ultimately turned into cirrhosis of the liver. We were then told that he was going to need a liver transplant.
By the time Alec was 2 ½ years old, he had required 17 intestinal surgeries. His liver was getting sicker and sicker, so he was evaluated for a liver transplant at Primary Children’s. It was determined that he would not be a good candidate due to his short gut, as they were not convinced that his gut would be able to work well enough for him to come off of TPN. They were concerned that he would ultimately need an intestinal transplant as well.
We were referred to another transplant center, the University of Nebraska Medical Center, for consultation. They evaluated Alec and determined that he would be a good candidate for isolated liver transplantation as they felt his gut had the ability to recover and support him nutritionally. They had much more experience with kids like Alec and helped us to feel at ease with this decision. Alec was put on the transplant list in June of 1999. We waited a very long 13 months for the call.
On July 19, 2000, we received the call that there was a liver available for Alec. I wasn’t sure how to feel. I was anxious, scared, and excited all at once. I wasn’t sure how to react, so I just cried. The call came in the morning, but it took several hours to get everything together. We already had our bags packed, but had since had another baby 4 months earlier, so there was a little more involved. We had many friends and relatives who came together to help us prepare.
We were asked to bring Alec into the hospital for an examination just to be sure that he was healthy enough to undergo the surgery. He had many labs drawn and was found to have a low hematocrit and needed a blood transfusion. We were taken by ambulance to the airport where a Life Flight turbo prop plane awaited our arrival. There were nurses on board that would administer the blood. The plane was very small and was barely able to accommodate our small family of four. We all climbed aboard and took off for Omaha. The nurses prepared the blood and soon realized that they didn’t have an infusion pump that would work with the tubing that is required for blood administration. They also didn’t have a pressure cuff onboard. My husband was the only person strong enough to squeeze the blood in by hand. This remains something that we joke about to this day.
It was about a two and a half hour flight. Once we landed, an ambulance was there to take us to the hospital. We arrived early in the evening. They took Alec back immediately, so we didn’t have much time to kiss him and tell him that we loved him. He was in surgery for approximately 10 hours. He came through the surgery like a champ. He was admitted to the pediatric ICU where he was closely monitored.
Alec was released from the ICU after five or six days and was transferred to the co-op care area where we performed a majority of his cares. The co-op care unit was in a facility called the Lied Transplant Center which was attached to the University of Nebraska Medical Center and was staffed with one to two nurses per floor that were available if you had any questions or needed any assistance.
About eight days out of surgery, Alec’s bowel perforated. He was emergently taken back to the OR where they found the hole, repaired it and cleaned out his abdominal cavity. They left his abdomen open and took him back to the OR twice a day for two weeks to clean out the bacteria. His abdomen was left open and we were trained to change the dressing twice daily, and it eventually healed closed on its own over a period of several weeks.
After nine weeks in Omaha, we were able to return home to Salt Lake City. Alec was doing extremely well with his new liver. He only had one episode of rejection, for which he was hospitalized, but has not had any since. He has been hospitalized off and on over the past 12 years since his transplant, mostly related to issues with his short bowel syndrome and some viral and/or bacterial infections, but overall has done extremely well.
Early on, in the midst of all of Alec’s hospitalizations, it became clear that I would not be able to maintain a job outside of the home, as they were not very understanding of the times that Alec was in the hospital and needed me. It occurred to me that I could apply for a job at Primary Children’s Medical Center and be able to be in close proximity to Alec while he was in the hospital.
I was fortunate enough to be hired in March of 1998 as a medical secretary for the Children’s Asthma Program. I worked there until July of 2000 when Alec had his liver transplant. I had delivered Alec’s little sister, Avery, in March of 2000 and took a maternity leave for eight weeks and then Alec was called for his liver transplant in July of 2000 and spent nine weeks in Nebraska. This amount of time went well over the allotted time given to employees for medical leave, so my position was filled while I was in Nebraska. When I came back, however, a position was available in the Sleep Lab as a sleep tech. I applied and got the position and was able to work nights so that I was able to be home with my children during the day.
Over the next year and a half, I continued to work nights and decided to take the exam to become a registered sleep tech. I passed the test in June of 2002 and was offered a position scoring the sleep studies and was able to do this from home. This was especially helpful as we welcomed another baby into our home in October of 2002. I worked at home until September of 2004, at which time I was offered a position as the sleep clinic coordinator. I worked directly with the sleep physician who mentored me and encouraged me to go to school and become a nurse.
It took me several years before I felt that I could muster up the energy to go to school. In the Fall of 2007, I started my pre-requisites at Salt Lake Community College. That first semester, my father became very ill. He had been diagnosed with autoimmune hepatitis that Spring, but his liver disease had already progressed to severe cirrhosis. He became critically ill and was placed on the liver transplant list in November of 2007, but was not as fortunate as Alec. He passed away the very week that I had my first set of finals on December 7th of 2007.
I think that my father’s passing motivated me even more. I was able to complete my pre-reqs in three semesters, at which time I applied for the nursing program through Intermountain Healthcare at SLCC. I was fortunate enough to be accepted and started nursing school in the Spring of 2008. Meanwhile, I continued to work fulltime as the sleep clinic coordinator.
In December of 2010, I graduated, with honors, from nursing school. I also received the Intermountain Healthcare Clinical Excellence Award. I initially worked as a nurse in the sleep clinic and then found out that there was a nurse transplant coordinator position available in liver disease and transplantation. This was my dream job! This particular job required that I have a bachelors of science degree in nursing, which I did not have, but learned that I could still apply if I were able to have my degree by the end of 2012.
Fortunately, I had been accepted into the RN to BSN program at the University of Utah and would be starting that Fall in 2011 and would graduate in December of 2012, just in the nick of time. I applied for the position and got it. I have been working as a liver transplant coordinator since June of 2011 and love my job! I am very passionate about what I do and feel extremely fortunate and honored to be able to work with and be a part of these family’s lives. It has been my privilege to get to know these special patients and their families and hope that, in some small way, I am able to touch their lives the way that they touch mine.