Transplant!
April 9, 1997
I don’t remember who I called first. Maybe it was the school to tell them I’d be absent for a week or two. Maybe I called my sister or maybe it was some close friends. They all knew other people they were to call because I had made a phone tree as soon as Matthew was placed on the list . Between phone calls and telling Grandpa Bob, I tried to pack. My suitcase was always half packed but I couldn’t think what to add. I thought I was hurrying but I think it took me about two hours before I was on my way to Omaha. I would stay every night with friends, in Bellevue, a twenty-minute drive from the Med Center. Grandpa would drive back and forth every other day.
When I got to the Med Center, the first person I saw was Brian, a friend of Lynn and Dave’s. Then Bob, Grandma Goering, my sister, and her husband arrived. Lynn and Dave, who stayed with Matthew until he was on his way to the operating room, soon joined us. It was early afternoon and the surgery took about eight hours.
There were some unusual circumstances connected with Matthew’s getting his liver. One of them concerned the beeper. We called it a beeper; it was a pager that served as the first line of communication that the liver team had in the event a liver came available. Although the team also had Lynn and Dave’s home number, Lynn’s work number, Dave’s work number, and grandparents’ numbers, the beeper number was considered the quickest way to contact a recipient.
Except for a few times that Dave wore the beeper when he took Matthew to Grandma Goering’s in Grand Island, Lynn always had the beeper with her. When she slept, it was beside her bed. When she worked, it was at her waist. At home, outside, inside, she always had the beeper. That is, she always had the beeper from October until April 8th. On April 9th, she was at work, headed for a meeting, and all of the sudden she realized she didn’t have the beeper. She had just told her boss that she had to go home and get it, when Dave called. The liver team coordinators had tried the beeper number first and then located Dave at his office. We laughed when Lynn and Dave told us this as we were waiting for Matthew to get out of surgery. It seemed ironic and fortunate that calm and steady Dave would be the first one to get the exciting news.
The Most Generous Gift
On the serious side, we found out that Matthew was not the first choice to receive this particular liver. The first choice was a child whose family couldn’t get transportation to Omaha arranged quickly enough. I assume they lived some distance away and needed air transportation. This was difficult to fathom as I thought we would have stopped at nothing to get Matthew on a plane had that been necessary. We even had something of a back-up if it should ever become necessary for Matthew to fly to some distant cancer or transplant center. One of my friends had become acquainted with a fellow from the Omaha area who had his own plane. He had promised to fly Matthew anyplace at anytime with a few hours’ notice. I still keep his card on my refrigerator. We were fortunate that the University of Nebraska Medical Center and its capable liver transplant team were only an hour’s drive from Lincoln. It seemed like that liver was meant for Matthew.Also sobering, was the thought of the child whose death meant a new liver for Matthew. Some day we hope to thank them in a more personal way but, in the meantime, we ask God’s blessing on that child and its family.
Recovery
Complications
Recovery
Matthew’s progress the first few days after transplant came close to breaking records. During the first night, he pulled out his own air tube and, since he was doing so well, they didn’t replace it. I guess this was almost unheard of. On the second day after surgery, he got out of intensive care, another near record-breaking feat. Even be
Matthew’s progress the first few days after transplant came close to breaking records. During the first night, he pulled out his own air tube and, since he was doing so well, they didn’t replace it. I guess this was almost unheard of. On the second day after surgery, he got out of intensive care, another near record-breaking feat. Even before leaving ICU, he was started on the medication that he will take every day for the rest of his life, until researchers come up with something better. It is an anti-rejection drug called Neoral.
Biopsies
Complications
Recovery
There are complications to watch for in a transplant recipient. They are infection, rejection, and blocked ducts. Matthew has experienced all of them in varying degrees, some more than once.
On April 15, they had to do a liver biopsy because his counts indicated possible rejection. This was quite an ordeal, mainly because the sedative they
There are complications to watch for in a transplant recipient. They are infection, rejection, and blocked ducts. Matthew has experienced all of them in varying degrees, some more than once.
On April 15, they had to do a liver biopsy because his counts indicated possible rejection. This was quite an ordeal, mainly because the sedative they used gave him a paradoxical reaction, meaning it affected him the opposite of what is expected. What it meant to Lynn and Dave is that they had a mad wildcat on their hands for several hours. They were experienced with that kind of reaction; several times during his remission until the last year or so when he got old enough to lie still on his own, Matthew had to be sedated for periodic CT scans. With experience, Lynn has since worked with anesthesiologists, keeping her own records and reminding them about the particular sedatives that don’t work well for Matthew. It has paid off because several biopsies and other procedures have been necessary since April.
Complications
Complications
Complications
The biopsy showed a mild rejection episode and a bolus (a massive dose) of anti-rejection medication had to be administered. We were warned that this could cause extreme mood changes. He did act a little grouchy for a while but the main mood change we noticed was quite humorous.
For several hours one day, Matthew was the life of the party.
The biopsy showed a mild rejection episode and a bolus (a massive dose) of anti-rejection medication had to be administered. We were warned that this could cause extreme mood changes. He did act a little grouchy for a while but the main mood change we noticed was quite humorous.
For several hours one day, Matthew was the life of the party. It was like happy hour with Matthew the guest of honor. He was euphoric, regaling nurses, doctors, anyone in sight, with all manner of comments and information. We could hardly believe it.
The Blurry First Month Post-Transplant
Prayers & Support
Prayers & Support
Prayers & Support
On his visits to the hospital, Grandpa Bob always told us who he had visited with in Stromsburg and how happy everyone was with Matthew’s progress. The most heartening news he gave us was about Leighton, Matthew’s very good friend. On the Sunday after Matthew’s transplant, the minister of Leighton’s church asked if there were any prayer c
On his visits to the hospital, Grandpa Bob always told us who he had visited with in Stromsburg and how happy everyone was with Matthew’s progress. The most heartening news he gave us was about Leighton, Matthew’s very good friend. On the Sunday after Matthew’s transplant, the minister of Leighton’s church asked if there were any prayer concerns. Leighton nudged his mom and said, "We should tell everybody about Matthew." She replied that he should do it. He stood up and said, "My friend Matthew got a liver. It’s a miracle." I’m not sure if he elaborated or not but others have commented that there wasn’t a dry eye in the church.
Discharge
Prayers & Support
Prayers & Support
April 17th was a happy day. Matthew was released from the hospital! Not to go home to Lincoln as the doctors wanted him close to the hospital and the hospital labs for daily blood work. After considering several options, Lynn and Dave decided the best thing to do was to accept Bobbi’s offer. Bobbi lives with her daughter and family in Be
April 17th was a happy day. Matthew was released from the hospital! Not to go home to Lincoln as the doctors wanted him close to the hospital and the hospital labs for daily blood work. After considering several options, Lynn and Dave decided the best thing to do was to accept Bobbi’s offer. Bobbi lives with her daughter and family in Bellevue and she graciously offered to vacate her lower level apartment and move upstairs to Mick and Jeff’s spare bedroom. Our family was welcomed to stay there as long as necessary. What a thoughtful friend!
Home Care
Prayers & Support
Trains Again
Before leaving the hospital, Lynn received extensive instructions on drawing blood and giving medications. A courier was scheduled to pick up Matthew’s blood samples every morning and take them to the Med Center lab.
As we drove JFK Freeway from the Med Center to Bellevue, we formed a convoy. I led the way, followed by Lynn, followed by Da
Before leaving the hospital, Lynn received extensive instructions on drawing blood and giving medications. A courier was scheduled to pick up Matthew’s blood samples every morning and take them to the Med Center lab.
As we drove JFK Freeway from the Med Center to Bellevue, we formed a convoy. I led the way, followed by Lynn, followed by Dave, and Grandpa brought up the rear, Matthew riding with him. We almost needed that many vehicles as clothes, toys, and medical gear had accumulated in nine days. As soon as we arrived, Matthew saw the huge dirt piles associated with all the new housing construction. So Grandma, attired in the oldest shoes and jeans available, and Matthew, armed with his newest and/or favorite toys, headed for DIRT. It was spitting a little rain but it was a fabulous day.
Trains Again
Prayers & Support
Trains Again
For several days, Matthew wasn’t as energetic as he thought he was so we soon began to really appreciate the Nintendo game that Lynn’s boss had loaned them. Although he didn’t have all of his strength back, he enjoyed a few trips to the zoo and a couple of visits to the Western Heritage Museum. The Museum had a real steam engine, various
For several days, Matthew wasn’t as energetic as he thought he was so we soon began to really appreciate the Nintendo game that Lynn’s boss had loaned them. Although he didn’t have all of his strength back, he enjoyed a few trips to the zoo and a couple of visits to the Western Heritage Museum. The Museum had a real steam engine, various train cars, and a caboose. It also had a huge electric train layout so you can imagine that was quite a thrill for Matthew.
Another thing that Matthew enjoyed in Bellevue was the big black rabbit. The rabbit belonged to Bobbi’s neighbors and they let Matthew play with it whenever he wanted to.
Home is the best place.
Matthew, 7 Days Post Liver Transplant
Delicate Balancing Act
New Normal
Lab, Lab & More Lab
Temporary "Home"
There were some bad times for Matthew. Removing tape in order to change or clean his Infusa-Port and his other IV access was very painful. After one particular bad time, Matthew commented, "Nobody should have to go through this." This insight was relatively new; up until about six months before, shortly before he turned five, I believe Ma
There were some bad times for Matthew. Removing tape in order to change or clean his Infusa-Port and his other IV access was very painful. After one particular bad time, Matthew commented, "Nobody should have to go through this." This insight was relatively new; up until about six months before, shortly before he turned five, I believe Matthew thought all of his ordeals were normal. I guess two, three, and four-year-olds don’t exchange notes on how many shots, transfusions, and x-rays they’ve had. In an article on cancer survivors published in the Lincoln paper in June of 1996, a year earlier, Dave was quoted as saying, "If you didn’t know what he had gone through you would think he was a normal kid. He’s real sociable. He loves people. Matthew doesn’t yet understand that other kids don’t have to go through all the medical treatments he has.".
Temporary "Home"
Lab, Lab & More Lab
Temporary "Home"
The days in Bellevue continued and we began to look forward to going home. Matthew repeated, "Home is the best place to be," and then he added, "But if you can’t be home, Bobbi’s is the next best place." He was enjoying getting acquainted with O’Neil, Bobbi’s two-year-old grandson; he looked at Mick with worshipful eyes. Mick told her sci
The days in Bellevue continued and we began to look forward to going home. Matthew repeated, "Home is the best place to be," and then he added, "But if you can’t be home, Bobbi’s is the next best place." He was enjoying getting acquainted with O’Neil, Bobbi’s two-year-old grandson; he looked at Mick with worshipful eyes. Mick told her science class about Matthew and used his case to motivate them to learn some human anatomy. The class made home-made get well cards for Matthew. Some guys from Burlington-Northern even came and visited. Matthew was later featured in a full-page article of the railroad newsletter.
Lab, Lab & More Lab
Lab, Lab & More Lab
Lab, Lab & More Lab
Matthew’s liver counts were sometimes up and sometimes down and his medications had to be altered almost daily. April 27th was sort of a downer day; instead of being able to make plans to go home soon, we were faced with counts that were up a little more. The doctors said that if they were not down by the next day, another biopsy would be
Matthew’s liver counts were sometimes up and sometimes down and his medications had to be altered almost daily. April 27th was sort of a downer day; instead of being able to make plans to go home soon, we were faced with counts that were up a little more. The doctors said that if they were not down by the next day, another biopsy would be necessary. Trying to be optimistic, I said to Bob, "Maybe the counts will be OK." Bob answered, "That guy needs a break."
Going Home
Lab, Lab & More Lab
Lab, Lab & More Lab
He got a break! At 9:30 AM, April 28, 1997, Lynn got the news. Matthew’s counts were down and we could go to Lincoln. Arrangements had been made for Home Health Care to deliver medications and medical instruments to their home and St. Elizabeth’s Hospital lab would do the blood work.
Matthew was torn; maybe we should wait until Bobbi, Mic
He got a break! At 9:30 AM, April 28, 1997, Lynn got the news. Matthew’s counts were down and we could go to Lincoln. Arrangements had been made for Home Health Care to deliver medications and medical instruments to their home and St. Elizabeth’s Hospital lab would do the blood work.
Matthew was torn; maybe we should wait until Bobbi, Mick, and Jeff got home from work and O’Neil got home from day care so he could tell them goodbye. But home was calling him after being gone for seventeen days and we were soon on our way. Just before we left, Mick, whom I had called earlier to inform her we were leaving, returned my call and talked to Matthew. After he hung up, I commented, "Isn’t O’Neil lucky to have such a nice mom?" Without hesitating, he said, "And I’m lucky to have a nice mom too."
Complications
Home, Hospital, Repeat
Home, Hospital, Repeat
Home, Hospital, Repeat
We were so happy. I told Matthew, "It’s a beautiful sunshiny day. Maybe God planned it for your day of going home."
Matthew answered, "God knows where I live, he knows where everybody lives -- Sarah, Kyle, everybody." (Sarah, Kyle, everybody are friends at day care.)
Since that day, up until the time of this writing, September 1997, Matthe
We were so happy. I told Matthew, "It’s a beautiful sunshiny day. Maybe God planned it for your day of going home."
Matthew answered, "God knows where I live, he knows where everybody lives -- Sarah, Kyle, everybody." (Sarah, Kyle, everybody are friends at day care.)
Since that day, up until the time of this writing, September 1997, Matthew has been in the hospital seven or eight times. The first time was just a few days later when he had to be treated for cytomegalovirus (CMV) . CMV is a virus that is often present in healthy people’s blood without causing any symptoms. Because of immuno-suppression, the virus is dangerous for transplant recipients. Roughly half of solid organ transplant recipients develop CMV infection in the first 3 months following transplant. Fortunately, there is an anti-viral medication that is effective in treating it. We were also told that most patients generally experience just one episode with this virus.
Bile Duct Stents
Home, Hospital, Repeat
Home, Hospital, Repeat
Other hospitalizations have been for bacterial infections and for tube procedures. The latter has been the most persistent problem. Matthew’s bile ducts have developed strictures, which retards the flow of bile out of the liver into the intestine. Several times, he has had to have stents inserted into these ducts and protruding out of his
Other hospitalizations have been for bacterial infections and for tube procedures. The latter has been the most persistent problem. Matthew’s bile ducts have developed strictures, which retards the flow of bile out of the liver into the intestine. Several times, he has had to have stents inserted into these ducts and protruding out of his body. These stents are tubes with perforations and are generally left in for several weeks. At one time this summer he had two stents, but now he only has one. Because of these tubes, Matthew had to forego swimming for a second summer in a row.
Inserting the stents and sometimes, a week or so later, manipulating them into the correct position were always traumatic experiences. General anesthetic had to be administered and quite often the procedure released bacteria from the accumulated bile. The released bacteria usually brought on alarming chills, followed by spikes in temperature. When Matthew was experiencing chills, he shook and his teeth chattered, and wanted his mom to hold him close while we piled on blankets. Two times so far, Matthew has had to undergo fourteen-day IV antibiotics. These had to be given three times each day and took about half an hour each time. Lynn had learned the skills and since Matthew still had his Infusa-Port, he could be released from the hospital and be at home.
Thankful
Home, Hospital, Repeat
Thankful
Did I say I hated the University of Nebraska Medical Center? That’s not true any longer. Yes, it’s big; but there are wonderful people there. Yes, it’s a confusing conglomeration of additions and annexes; but miracles are performed there. Yes, it takes eons to get from the parking facility; but we have wonderful friends there.
I think Matt
Did I say I hated the University of Nebraska Medical Center? That’s not true any longer. Yes, it’s big; but there are wonderful people there. Yes, it’s a confusing conglomeration of additions and annexes; but miracles are performed there. Yes, it takes eons to get from the parking facility; but we have wonderful friends there.
I think Matthew has been in every room on sixth floor pediatrics, some more than once. When we show up, we are greeted with, "Are you back again?" He’s probably had every nurse at one time or another. We know the nurses only by their first names -- Mel, Mary Ellen, etc. We know the doctors only by their last names -- Kaufman, Langnas, Keller, etc. The Child Life people, although Matthew doesn’t want anything to do with any toys, videos, or whatever owned by the hospital, have added cheer to our visits. We all especially needed the distraction of the picnic put on by Child Life a few days before the 4th of July. The games and fellowship helped Matthew deal with the disappointment of just receiving his second tube. Dave won the watermelon seed spitting contest.
Patients and Patience
One Bad Apple
Strawberry Quik
Strawberry Quik
In all these years, we have come in contact with hundred of nurses, doctors, and other medical personnel who have been patient and caring. I marvel at the knowledge and professional manner they have shown in helping Matthew along the way.
One nurse was the exception.
I happened to be sitting with Matthew one day when he was still in the Ped
In all these years, we have come in contact with hundred of nurses, doctors, and other medical personnel who have been patient and caring. I marvel at the knowledge and professional manner they have shown in helping Matthew along the way.
One nurse was the exception.
I happened to be sitting with Matthew one day when he was still in the Pediatric Intensive Care Unit so Lynn could have a short break. A nurse approached and reached for his IV. Matthew automatically brushed her hand away saying, "No!" She said, "It’s either that or taking it orally."
I quickly said, "Matthew is very good at taking oral medication." She immediately squirted the med into his mouth; he swallowed and made a face.
She said, "The bad part of it is, you’ll have to take this the rest of your life."
All of this happened in less than a minute, so fast that it took me awhile to realize what had happened. When Lynn returned and I related what had occurred, she said, "We need to tell someone," which we did. We were assured that it would be dealt with.
Strawberry Quik
Strawberry Quik
Strawberry Quik
For several days, Matthew balked at taking oral medications. This had never been a problem before and, through Lynn’s patience and inspiration to mix the medication with Strawberry Quik, it is no longer a problem.
This kind of thoughtless remark was, thankfully, a rarity. Granted, children can be tedious -- especially children in PICU and
For several days, Matthew balked at taking oral medications. This had never been a problem before and, through Lynn’s patience and inspiration to mix the medication with Strawberry Quik, it is no longer a problem.
This kind of thoughtless remark was, thankfully, a rarity. Granted, children can be tedious -- especially children in PICU and more especially children in PICU who have undergone four years of this, that and another thing. But I have seen ninety-nine and forty-four one hundredths percent of nurses and doctors who deal with sick children in a caring, thoughtful, and understanding way. One bad apple can do a lot of damage.
Dirt
Strawberry Quik
Duncan The Cat
Mel, Matthew’s favorite nurse, and Dr. Keller, his favorite resident doctor, are two people who bring dedication and devotion to their patients. Matthew recognized that immediately, and it doesn’t hurt that they will talk "tractors," "trains," "cranes," and "back hoes" with him!
I think Matthew might be the only person who has played in th
Mel, Matthew’s favorite nurse, and Dr. Keller, his favorite resident doctor, are two people who bring dedication and devotion to their patients. Matthew recognized that immediately, and it doesn’t hurt that they will talk "tractors," "trains," "cranes," and "back hoes" with him!
I think Matthew might be the only person who has played in the dirt right in front of the University of Nebraska Medical Center. During the last year, we have watched the progress of construction of the new transplant center, which can be viewed from the Circle Drive. This inspired to Matthew to play with his dirt toys in whatever little pile of dirt he could find there. Many times we took him to the Circle Drive, IV pole and all. This helped pass some of the long hours of waiting.
Duncan The Cat
Strawberry Quik
Duncan The Cat
Between hospital stays and medicines, Lynn and Matthew came to Stromsburg most weekends. Quite often we went to a friend’s farm. Matthew enjoyed hunting eggs and even got to steer the tractor and the Bob Cat. The main attraction, though, was the cat family. In July, Matthew picked out the friendliest kitten, a tortoise shell. He named it
Between hospital stays and medicines, Lynn and Matthew came to Stromsburg most weekends. Quite often we went to a friend’s farm. Matthew enjoyed hunting eggs and even got to steer the tractor and the Bob Cat. The main attraction, though, was the cat family. In July, Matthew picked out the friendliest kitten, a tortoise shell. He named it Duncan Duke, later shortened to Duncan. This was an unusual name for a female cat. Duncan is now the fourth member of the Dave Goering family and sleeps with Matthew every night.
It was a thrill for Matthew when our friend who works for John Deere took him for a ride in a huge articulated John Deere tractor. Our friend said, "Any kid that knows what ‘articulated’ means deserves a special ride."
Cherish Every Day, Even Tough Ones
Matthew & Duncan
Matthew & Duncan
Matthew & Duncan
From the April 9th transplant up to the end of July, Matthew lacked his usual energy level. However, he managed to take part in many normal activities. On May Day, he presented May baskets to his favorite construction worker friends.
Matthew was also always anxious to return to day care to see all of his friends there. He was able to go
From the April 9th transplant up to the end of July, Matthew lacked his usual energy level. However, he managed to take part in many normal activities. On May Day, he presented May baskets to his favorite construction worker friends.
Matthew was also always anxious to return to day care to see all of his friends there. He was able to go to day care most of the time that he wasn’t in the hospital.
Dave’s friend, Ron, gave Matthew a big bunch of fireworks. Although Matthew looked forward to a July 4th visit to the lake, he was too tired to stay for the fireworks. We returned to Stromsburg and he and Dave shot off the fireworks there.
Bike
Matthew & Duncan
Matthew & Duncan
Even with all of the complications, Matthew’s energy seemed to be almost normal by the end of July. I noticed then that there was one whole weekend that wasn’t marred by a stomach ache, a spiked temperature, or inordinate fatigue. Soon after that, he began riding his bicycle in Lincoln without training wheels. Grandpa unpacked the bicycle
Even with all of the complications, Matthew’s energy seemed to be almost normal by the end of July. I noticed then that there was one whole weekend that wasn’t marred by a stomach ache, a spiked temperature, or inordinate fatigue. Soon after that, he began riding his bicycle in Lincoln without training wheels. Grandpa unpacked the bicycle Uncle Steve had sent so now Matthew has "wheels" for his Stromsburg visits.
Bushy Eyebrows
Matthew & Duncan
Bushy Eyebrows
There continue to be complications, but they seem to be farther apart. During one of Matthew’s recent hospitalizations, I informed him that his second cousin was having surgery on her foot that same day.
"Will it hurt?" he asked.
"Yes. She’ll probably have to stay off of it for awhile and maybe use crutches."
"Will her hair fall out?" he ask
There continue to be complications, but they seem to be farther apart. During one of Matthew’s recent hospitalizations, I informed him that his second cousin was having surgery on her foot that same day.
"Will it hurt?" he asked.
"Yes. She’ll probably have to stay off of it for awhile and maybe use crutches."
"Will her hair fall out?" he asked.
I looked at Matthew. His medication caused a lot of hair growth. His beautiful brown eyes were fringed with long curly lashes that would make Liz Taylor eat her heart out. Bushy eyebrows and a thick head of hair marked him as a transplant recipient. What a change from Christmas of 1996 when chemo therapy had left him without hair, eyebrows, or eyelashes! A recent blood test and CT scan have confirmed that Matthew is cancer free.
Kindergarten
Matthew & Duncan
Bushy Eyebrows
On August 24, 1997, Matthew entered kindergarten at Randolph Elementary School, Lincoln, Nebraska. Like every grandma, I wanted to be a little mouse peeking out to witness that day. He didn’t know it, but he was surrounded by loving thoughts and prayers.
So what’s it all about? It’s about love and compassion, despair and hope, faith and c
On August 24, 1997, Matthew entered kindergarten at Randolph Elementary School, Lincoln, Nebraska. Like every grandma, I wanted to be a little mouse peeking out to witness that day. He didn’t know it, but he was surrounded by loving thoughts and prayers.
So what’s it all about? It’s about love and compassion, despair and hope, faith and courage. It’s about friendship and joy, disappointment and fulfillment, appreciating life and grabbing onto every day and wringing every minute out of every hour.
But mostly, it’s a tribute to family and friends for loving support, to doctors and nurses for knowledge and care, to God for strength and healing, and to Matthew for being brave, and sometimes "mean.".