Matthew's Story

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APRIL 1997 -- TRANSPLANT

Transplant

9:30 AM, Wednesday, April 9, 1997, the miracle occurred. Our phone rang and Lynn’s boss told me, "There’s a liver for Matthew! Lynn has gone to pick him up at day care and then she’s going home to pack. They’ll be leaving for the Med Center in about an hour." I yelled and laughed and cried. Like almost four years before, I was weak, but this time from relief and happiness.

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 got on the list in October. 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 Matthew 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.

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.

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.

Matthew, one week after transplant, April 1997

 

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Complications

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.

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.

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.

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!

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.

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