Tuesday, April 29, 2008

Why I blog II

For girls like Jordan: (emphasis mine)

Local teen waits for lung transplant

Brenda Tollett Associate Editor

Ada— As students at Ada High School prepare for summer break, 17-year-old Jordan Lee Ulrich waits for a lung transplant.
The Ada teen was was born with Cystic Fibrosis and has spent much of her young life in hospitals.
“Not a single year has gone by when she didn’t have to be hospitalized,” said Lesa Ulrich, Jordan’s mother. “In 2007 alone, Jordan was admitted to Dallas Children’s Medical Center in February and stayed until April. She was there again in July. In September she went for her transplant evaluation at St. Louis Children’s Hospital in St. Louis, Mo. Shortly after returning to Oklahoma she had to be hospitalized again in Dallas for all of October, November and most of December.”
Now she waits at St. Louis Children’s Hospital for a new lung to become available.
Until late 2007, Lesa Ulrich said her daughter had done surprisingly well. She began having trouble controlling pain in her lungs and couldn’t breath without an oxygen machine.
“On Christmas morning, she wanted to come downstairs to open presents,” Lesa Ulrich said. However, the teen was to weak to walk. Her father, Dr. John Ulrich, carried her down the stairs but within 10 minutes she exausted.
Her routine follow-up appointment with the St. Louis transplant team in March 2008 turned into a three-week hospital stay, leaving the family totally unprepared. “Upon arriving at her appointment, Jordan’s pulmonary function test scores were very bad,” said her mother. “We had actually already checked out of our motel and were on our way home when St. Louis (transplant team) called and asked us to return.”
Hospital officials, according to Lesa Ulrich, were concerned her daughter wasn’t well enough to return to Dallas. Using four of the strongest IV antibiotics, Jordan Ulrich was tested again one week later. Her scores were even lower than before and have continued to drop.
Fundraising for Jordan Ulrich’s transplant is required by the hosptial in St. Louis, according to Lesa Ulrich. In addition to costs associated with the transplant, funds are also needed for transportation, lodging, food, and medical supplies. A transplant fund has been established in Jordan Ulrich’s name at East Central Credit Union, 801 E. Main, Ada.
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States. According to the Cystic Fibrosis Foundation, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
When the Cystic Fibrosis Foundation was established in 1955, most children did not live to attend elementary school. Today, the predicted median age of survival is 37 years.
People with CF can have a variety of symptoms, including:
✔ very salty-tasting skin;
✔ persistent coughing, at times with phlegm;
✔ frequent lung infections;
✔ wheezing or shortness of breath;
✔ poor growth/weight gain in spite of a good appetite; and
✔ frequent greasy, bulky stools or difficulty in bowel movements.

You know the part that got me? The part about being able to enjoy Christmas for only 10 minutes.

I love Christmas, as anyone who knows me even slightly will tell you. It's such a major event for me. I go hog wild with cards, presents, and church choir stuff. It really is "the most wonderful time of the year." If I could only celebrate for ten minutes....I can't imagine. That's always been a "normal" day for us. I have never (thankfully!) spent it at The Resort.

One year I was on home TPN and lipids and Mom insisted I keep on the "feed" while we opened gifts. I was not happy. But I have always enjoyed Christmas day and our Christmas festivities in general. OK, yes, once I was a Branden's Christmas party doped up on phenergan, but I don't think anyone noticed. :)

Pray that Jordan has a better Christmas this year. She deserves it.

1 comment:

65rosesqueen said...

I found your blog and I have read every entry. I am so inspired by your story and by your faith. My daughter, Megan, will be going to St. Louis next week for a lung transplant evaluation. Please pray for her. I have marked your blog as a favorite and hope to keep up with you. You obviously have not allowed your illness to define you. You have taken this life you have been given and have glorified God. You have definitely found great purpose and meaning in life. Much love and prayers, Margaret Payne