Winsted-Lester Prairie Journal, March 15, 1999

Bake sale fundraiser to benefit family of hydrocephalus child

By Luis Puga

When Austin Luedke grows up, he wants to be a monster truck driver.

Just like any other five-year-old, he loves the Vikings, enjoys fishing, and interrupts his mother with questions and requests for pop.

He likes to play with his hand held video games and proudly dons his Randy Moss jersey when he can.

However, Austin has hydrocephalus.

A condition he has had since shortly after birth, it is the build-up of too much cerebrospinal fluid (CSF) in the brain.

CSF, which is found in the ventricles, is a fluid produced in every body to cushion delicate brain and spinal cord tissues. It also maintains nutrients around the central nervous system.

In Austin's case, this fluid, typically drained into the bloodstream, is accumulating in his head. The result is an extreme amount of pressure on the brain, and the worst effects could be brain damage or even death.

For Brad and Pam Luedke, that is the worst possibility of their son's condition. However, with surgery, that reality has not developed.

Austin receives the only known treatment for his condition and those of many other children.

He has a shunt system which drains the excess fluid from his head to his stomach. With this in place, Austin can lead a long and normal life.

However, the journey that the family has taken one up to this point has been a long .

Since his diagnosis shortly after birth, Austin has undergone nine major surgeries. He had his first shunt when he was just 18 months old.

Last November, complications arose, and from that time to now, the Luedkes have watched their son go through a number of major procedures.

The shunt is not a device that is left alone once in place. From time to time, a shunt revision must be done. This includes making adjustments or clearing any blockages or dealing with any infections that occur.

Revisions depend on each case. Pam said she knows of cases where a shunt was placed and a revision wasn't done until the patient was 18. She's also met a mother who's son has had 30-some procedures. Each revision is a major surgery.

The device is essentially valve and tubing. A catheter is placed in the ventricles in the brain. A valve regulates the amount of CSF drained by sensing how much pressure builds up against the ventricles.

The tube reaches down past the ear to the abdominal cavity where the fluid is released. It is eventually discharged from the body through the kidneys.

While it sounds simple, the device is delicate.

Austin now has a new shunt, one recently approved by the FDA. The revisions have been many of late and the Luedkes can't predict how long it will be until the next one.

Pam said, "We take it day by day . . . today is a good day."

"We could be back there tomorrow," said Brad.

The unpredictability of the condition has them "paranoid."

A headache, flu symptoms, or vomiting could mean major surgery for Austin.

Brad recalled that when his son was younger, the pain of the pressure would cause his son to bang his head against the wall.

Now, at five-years-old, Austin, and his parents, have become experts at detecting any problems. The signs are apparent, including irritability and Austin asking for his father.

"You learn real quick," said Pam of all the expertise they have accumulated.

But not all of Austin's surgeries have been revisions. Perhaps one of the more trying times for the Luedkes was when Austin had to have emergency surgery recently.

In this case, after a revision, the pressure was still present and an external drainage device had to be put in place.

The events happened quickly over a few days and Pam recalls them while handling a purple cross in her hands. Austin woke up screaming from surgery and doctors confirmed through diagnostic testing that surgery was needed.

The end result was that Austin had the front of his skull removed and placed in his abdominal cavity for one week to allow the brain to relax.

He still bears a scar from one ear to the other from that surgery and shows the scar on his stomach with the innocent pride of a child.

To ask if the surgeries have been a trial for the Luedkes is to ask the obvious.

Besides the constant worry and concern, there have been many missed days of work, issues of attention with their other two children, Trevor and McKenna, and concerns about insurance limits.

Pam said, "I am just glad he's here and glad he's OK." She's heard of other kids who haven't made it.

The family is also overwhelmed by the help they have gotten. Pam cannot say enough about their Dr. Mohammed Nagib, who has been with them throughout the ordeal.

Terese O'Fallon, who assists Nagib, has grown to be a valued friend of the Luedkes and Austin, as well.

They are also very grateful to their family, who helped them through the surgeries in the Twin Cities.

The Luedkes are also impressed by the outpouring of support they've received. Letters and calls of support have come from friends and neighbors as well as perfect strangers.

Said Pam, "There's some really good people out in the world."

A demonstation of that support will take place Sunday, March 21 at St. Paul Lutheran Chruch, Lester Prairie, as the church conducts a bake sale as a fundraiser for the family.

Initially, Pam Luedke was a little nervous to receive the help, but is now very grateful. The fundraiser will have door offerings and a bake sale between services.

Lutheran Brotherhood will also match funds up to a certain amount.

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