Dominic Lauranzano`s - American Liver Foundation

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Dominic Lauranzano’s Story
By Loralei Lauranzano
Dominic was born with Biliary Atresia, an infant liver disease with no known cause. Since his
diagnosis he has received three liver transplants and more additional surgeries than I can count.
His first transplant happened when he was 9 months old. During that transplant the graft for his
hepatic artery, which supplies oxygen-rich blood to the liver, did not take and he almost lost the
organ shortly after transplant. While he waited for re-transplant his liver developed collateral
veins that took over for the failed graft and provided him with almost a full year of very good
health. Later, complications due to poor blood flow developed and we spent the next four years
in and out of the hospital; First using surgery and different procedures to try to save the liver,
then later managing the symptoms and illness of liver disease while we waited for another
transplant.
By the time Dominic received his second transplant he was old enough to understand most of
what was going on in his life. He was tired of being sick and tired of being different from other
children. Even though he was nervous about the transplant he was looking forward to the
promise of good health and the normal life that we all hoped would be the result. On December
12, 2001 he received his new liver and things looked pretty good. His liver function tests
weren’t exactly where we had hoped they would be but there was still time for things to improve.
We waited and hoped, but his liver functions continued to decline. Finally, in September 2002
surgery was planned and attempted as a last chance to save that liver, but it was not meant to be.
Once inside Dominic the team could see that the damage was throughout his liver and that it was
progressive. Telling him he needed another transplant was one of the hardest things I think any
of us have ever had to do. I still cry when I think of that day. I also remember with gratitude the
patience, concern, and understanding that Dr. Jenkins showed Dominic when he had to give him
the news. It was tragic and devastating, and there was no way off of the hard road that stretched
before him.
As he waited and his health declined, Dominic became depressed and introverted. He was
discouraged that his hopes for a normal, healthy body had not been achieved, and scared to have
another transplant. He was also frightened that the next one wouldn’t work either. His anxieties
developed into symptoms of OCD and he washed his hands so frequently and severely that his
skin began to peel off. He was placed on anti-depressants along with regular psychiatric therapy
which helped him cope a little better. By January 2003 he was fatigued, chronically nauseous,
vomited often, itchy, and simply did not feel well. He never wanted to go out and generally did
not talk to anyone outside of his immediate family.
One thing could make his face light up and make him forget his illness; baseball. It was his joy
and his escape. He had received a baseball board game called Stratomatic from his dad at
Christmas and he played it all the time. He also looked forward to the professional season and
even more to his Little League season. I started praying that God would make him well enough
to play out the season, and that his transplant wouldn’t come at a time that would affect his
ability to play. The month Little League started, his liver numbers improved slightly and he was
well enough to play all season. Not only did he participate in his own team’s games but he also
hung out with the team of older kids that his dad coached. His liver transplant call came just a
few days after the season ended. God really does care about the little details in life.
On Sunday evening, August 3, 2003 we were told to bring Dominic to Children’s Hospital. A
liver had been donated and it might be right for Dominic. Dr. Kim was on his way to see it and
he planned to procure and transport it himself. It is interesting to note that Dominic had paid
special attention to the sermon at church that morning and even went to speak with the visiting
pastor regarding it. The title was “The Unlistened-to Lessons of Life” and it was about how God
speaks to us during life’s most difficult times.
When we told Dominic it was time to go to the hospital, he looked at me with panic on his face
and said, “No, it’s not time yet. This liver is not the one.” I reassured him and got him ready to
leave. Of course he was scared but we needed to take this chance. His quality of life had
seriously declined and it was time to make him better. That look and those words would haunt
me later.
We all went to the hospital with him and got him settled into his room on 8 North. The rest of
the family said goodbye and went home with plans to return early the next morning to see him
off. He asked me to lay down with him. As I held him close I thought about the fact that this
would be the last time for a while that I would be able to hug him. When the transplant was done
I knew he would have I.V. lines, surgical drains and a painful incision that would get in the way.
I also remembered a day just a few months earlier in that same hospital. That day I sat near a
dear friend while she held her daughter as she breathed her last breath and stepped from this
world into Heaven. She was the same age as Dominic and had died waiting for a liver that didn’t
come soon enough. I wondered if I would have a similar goodbye soon, then I pushed the
thought from my mind and prayed for God’s own strength and peace.
We all walked Dominic down to the pre-op holding area the next morning. He tried to ignore
what was going on by hiding under the covers and trying to go back to sleep. I walked him into
the O.R., as is our habit, and held him as he went off to sleep. The surgery went well and for the
first few days he made an amazing recovery. He even took a short walk around the ICU a few
days post-op. Then he began to bleed internally and when other interventions failed he was
returned to the O.R. The bleeding was stopped and he was sent back to ICU looking a bit worse
for the trauma but we were hopeful that he would improve quickly. He was weak and in pain but
he could still smile and joke with everyone who came to see him.
A few days later things fell apart again. After a short visit with our other children I had returned
to the hospital to switch-off with my husband. The minute I saw Dominic I knew something was
wrong. He was in more pain and he just was not himself. I sat up all night and watched his
condition grow worse. Finally he started talking nonsense and didn’t know who I was. I asked
the nurse to call a doctor. Thankfully, they took me seriously and immediately had an ultrasound
done. His Portal Vein had collapsed and he was in danger of losing his new liver. He was
rushed back into surgery.
When I kissed him on the operating table early that morning I thought I would never see him
alive again. I still remember returning to ICU. My friend Lisa had been called at the same time
as my husband and other children. She arrived just before we brought Dominic down to the O.R.
While she went to get me coffee I sat in a waiting room, wrapped in a robe one of the nurses had
brought in for me holding Dominic’s teddy bear. I couldn’t move and I didn’t want to talk. All I
could do was pray. Silently I told God that if he took my boy He would take all the sunshine
from my life. I cried out to Him that our family just couldn’t lose Dominic; the hole his loss
would leave in our lives was too big for us to bear. Then I remembered all I had learned about
obedience to God and His provision for true freedom through obedience. Along with that
thought came the prayer that if He did take my boy I would need Him to give me the strength to
praise Him still. I had to trust our future in God’s hands. At the exact moment that I gave my
anxiety to God and asked Him for the strength to praise Him, He provided the peace and strength
I needed to wait. Those hours were long, but while I waited Lisa stayed with me, my husband
and children arrived, and our pastor traveled back from vacation to wait with us. We were all
relieved to sit with Dominic later that day as he watched a game and talked baseball with the
guys.
We thought surely now he would get better; but no, as the days and then weeks went by he
started experiencing more complications. Kidney trouble and serious fluid retention are the two
things that I remember most. He had so much fluid on-board that his body was enormous and
his skin stretched so tight that drops of fluid dripped from the pores. His breathing was impaired
and the pain was unbearable. Surgical drains in his belly were attached to wall-suction and oneliter containers. The containers had to be emptied hourly. He also had chest tubes draining fluid
at the same time. All of this was necessary to keep pressure from affecting the function of his
organs and to make room for his lungs to inflate. The fluid loss meant that he constantly
required replacements. Every IV, central line and arterial line was necessary to keep important
medications, fluids and blood products going into his body. The pain was constant, debilitating,
and completely out of our control. This torture lasted for weeks. One night another family in
ICU had a visit from someone in their church’s worship team and they stopped in to see Dominic
and play some praise music for him. We sang together while Dominic listened, then he asked
everyone to pray for him. After they left I sat with him and realized that while he didn’t seem to
want me to know it, his pain was increasing and breathing was becoming even more difficult.
As the night wore on his condition grew worse, and some time in the early morning hours he
looked at me and said “Mom, I can’t do this any more”. I begged him to hold on a little longer.
He didn’t answer me but said he wanted to see Laura, the transplant coordinator. A couple of
hours later he told his nurse, Christine, that he was going to die. Both of us knew that he was
giving up and that something needed to be done right away to help him. Christine spoke with the
doctors during early morning rounds and let them know that Dominic was not able to hold on
any more with his current level of pain and difficulty breathing. Right away they placed another
chest tube which provided more drainage around his lungs leaving him better able to breathe and
bear his pain.
Later in Dominic’s stay a collection of clotted blood was identified in his abdomen. It was
possibly putting pressure on his kidneys and affecting proper functions. Also, it was a breeding
ground for infection and needed to be drained. This was done in Interventional Radiology on the
second floor and then he was transported back up to ICU on the fifth. During that short trip from
I.R. to I.C.U. he lost a bag of blood and it was still pouring out. It was shift change so his day
nurse and night nurse were doing report when he came up. I told them what was happening and
within minutes they were both pushing large syringes of fluid into his lines, one after another,
while people rushed from all over ICU to stabilize him. It took more than an hour to get him out
of immediate danger and a very long night followed. The next day Dr. Kim told first me, and
then Dominic, that he would need surgery again. We thought all he would need to do was
cauterized areas that were bleeding and close him back up, so a quick and simple surgery was
planned. As I lifted him onto the table in the O.R. he looked at the clock and asked Dr. Kim to
tell him what time he would be out of surgery, and could he have a popsicle tonight. We tried to
give him vague answers but he was insistent, so Dr. Kim told him the truth as he saw it. I think
he said it should take no more than two hours, and yes he could have a popsicle tonight. It was
heartbreaking to me that those promises were not kept. Every surface in that part of his abdomen
was oozing blood and there was no way to keep him stable while they tried to cauterize the
tissue. He was packed with sterile gauze, hopefully to act as a pressure dressing and stop the
bleeding, closed up and sent back to his room in ICU. The plan was to keep him as sleepy and
quiet as possible, give him blood-products to promote clotting, wait and re-open him another day
to take the packing out.
I did not realize the danger he was in until the next day. As I sat with Dominic that Friday
almost everyone who had taken care of him over the years stopped in to see him (he was not
awake or responsive) and to talk to me. All of a sudden I realized that these people were coming
to let me know that they cared about Dominic. With a hug for me then a touch, a smile or a kiss
for Dominic, in their hearts they were giving him their love and possibly a last good-bye.
It was a sobering afternoon. Over and over I came to the thought that God Himself had given
His Son for me, how could I begrudge Him mine. I was also comforted that He knew my pain
better than anyone else could and grateful that He had given Dominic to our family to enjoy. I
reflected on the fact that God knows from the moment of conception exactly how long each of us
are going to live and what we are to accomplish while we are here. He could have given
Dominic to some other family, but if He had given me the choice I would not have relinquished
the joy and privilege of being Dominic’s mother to save myself from any of the heartache that
love has cost me. During the afternoon and evening, sitting next to my son, with the lights down
low and soft music playing, I knew God’s peace. Laura was our last visitor that evening and she
was a gift to me. The next gift was that Christine was on that night. Both Dominic and I trusted
her completely and so I was able to sleep for a few hours. The next morning before he was
prepared for surgery I cried and prayed. Christine hugged me and went home. Robin, the Social
Worker for the Liver Transplant Team, came in to wait with me even though it was her day off.
I realize now that it was because she wanted to be there if things didn’t go well. I knew
everyone else on the team was waiting and hoping for the best along with us. Praise God for His
mercy, the bleeding had stopped and Dominic was returned to us.
Dominic spent two months in ICU and another on the transplant unit. When he left ICU he was
completely wasted physically. There was absolutely nothing to him but skin and bones. He
could not bring a spoon to his mouth or sit up without assistance. By the time he was discharged
he could walk across his hospital room on his own and further with a walker. He came home on
IV nutrition, unable to climb stairs and requiring almost constant attention. The day he stepped
from the car onto his own front yard he whispered “I can’t believe I am really home”. His
progress has been amazing. Every achievement has been something to celebrate. His life will
always have some uncertainty and challenges but we are hopeful for his future.
One challenge presented itself during Christmas of 2006 when Dominic became very ill with
what we thought was a miserable virus. By Christmas day I was very concerned and wanted to
bring him to the emergency room, but he said no he wanted to stay home for the holiday. He
was admitted on the 26th and within a short time we received some shocking news. Dominic had
a dangerous blood infection. The transplant team was surprised and we were all terribly worried
about his current condition and uncertain future. IV antibiotics were begun and he was
transferred to ICU. The infection source was dead tissue in his liver, which had become an
abscess. The liver damaged had likely occurred weeks or months earlier when his Hepatic
Artery failed for no apparent reason. Fortunately collateral veins had developed and they were
keeping the rest of his liver healthy. The Hepatic Artery could not be fixed, the abscess was
drained, and the infection was eventually eliminated. We watch his liver functions carefully and
for now the collateral blood supply continues to keep his liver healthy.
There are no words to communicate our thanks for the dedicated care Dominic has received from
the Liver Transplant Team and all the other dear people at Children’s Hospital. They will
always have our love and appreciation. I wish I could mention each of them by name because
they have all contributed in their own unique ways; not just to Dominic’s health but also to our
family’s ability to cope and prosper under extraordinary circumstances. Also, our brothers and
sisters in Christ have supported us in immeasurable ways. Family, friends and neighbors have
gone to great lengths to help us too. There are notes made by hospital staff in Dominic’s medical
file attesting to the faithful love and support we have received over the years and the impact that
has had on our ability to maintain well under the pressure of Dominic’s illness. Finally, I must
mention the generosity of Dominic’s donor families. They have reached through their own
bottomless grief to give others a chance for life. I consider their choice one of the most unselfish
and loving decisions a human can ever make.
Dominic’s is just one of the many faces of people with liver disease. Transplantation has saved
his life but it has been a very hard road. Some day maybe there will be a cure for liver diseases
like Biliary Atresia. When that happens, other children will be spared the hardships my son has
had to endure. Until then I will pray that every family who lives through medical trials will
remember that each day brings its own joys, and life is always a gift worth celebrating.
Sincerely
Loralei Lauranzano
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