Matthew's Story

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APRIL TO AUGUST 1997 -- COMPLICATIONS

The Next Best Place

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.

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."

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.

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."

Home

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."

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, Kile, everybody." (Sarah, Kile, 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 a viral infection caused by a certain virus that is often present in people’s blood without causing any symptoms. Because of immuno-suppression, the virus is dangerous for transplant recipients. 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.

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 stints inserted into these ducts and protruding out of his body. These stints are tubes with perforations and are generally left in for several weeks. At one time this summer he had two stints, but now he only has one. Because of these tubes, Matthew had to forego swimming for a second summer in a row.

Inserting the stints 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.

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.

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.

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.

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.

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