Braxton Anderson is an energetic, well-mannered 4-year-old who loves riding horses. Before he was born, his parents, Cassie and TR Anderson, were told he had gastroschisis - a problem that could be remedied with a one or two month hospital stay.
There is a certain amount of anxiety that just naturally seems to come with the anticipated arrival of a first child. But about half way through their first pregnancy, Cassie and TR Anderson received news that raised that level of anxiety to a whole new level.
It was June 2008, and TR was participating in a rodeo as he often does during the summer. His wife, Cassie, was about four months along with their first child, and the couple couldn't be happier. As Cassie walked around the rodeo grounds, she made her way behind some of the horses - when all of a sudden, one of them kicked her. It was a horse TR knew well, and he says that particular horse was not known to have ever kicked anyone before.
Though Cassie did not appear to be injured in any way from the kick, because she was pregnant they thought it best to go to the doctor and get checked out - just to be on the safe side. Her OB doctor performed an ultrasound, and found something out of the ordinary with the baby.
The doctor discovered the Anderson's unborn child had gastroschisis, meaning part of the baby's gastrointestinal tract was outside his body. The condition was not caused by the kick from the horse, but was discovered as a result of it.
"The doctor said they thought the horse somehow knew something was wrong," says TR. "It kinda makes you wonder, as that horse had never kicked anyone before."
The couple was sent to the University of Nebraska Medical Center in Omaha to see a specialist for high-risk pregnancies. His name was Dr. Tomich, and in the course of the next few months the Andersons would get to know him quite well.
They were told the condition was nothing to worry too much about, that it was something the doctors were familiar with and could fix when the baby was born. Cassie made monthly trips to Omaha for routine ultrasounds, just to monitor the baby. In September, Cassie had to give up her job as a CNA, and soon after went to Omaha to stay until the baby was born.
Braxton enters the world
Cassie began having labor pains the night of Nov. 2, and says she didn't sleep all night. Exhausted, Cassie was given Ambien to help her sleep the next day when she went into labor.
"I had to wake her up to tell her it was time to have the baby," TL laughs.
With a team of 17 people packed into the delivery room, Braxton Anderson was born at 7:28 p.m., weighing 6 pounds 4 ounces, and measuring 17 1/2 inches. But it would be awhile before either of his parents had an opportunity to hold their new little bundle of joy.
Immediately after birth, Braxton was placed in a sterile bag which came up to his arm pits, and removed from the delivery room. TR says a team of three doctors worked on the baby for several minutes.
"One of the nurses hollered at me and said, 'Come on Dad. We're going to NICU (neo-natal intensive care unit). Try to keep up.' They raced him down there, with me right behind them," says TR.
Once in the NICU, a total of 10 to 15 people crowded into the small room, all taking different roles tending to the baby and preparing him for surgery. Meanwhile, a dazed and sedated Cassie was given a shower and cleaned up, still not completely aware of what was happening with baby Braxton.
At 10:30 that night, Braxton was taken to surgery to repair his bowel, which was outside his body. Little did Cassie and TR know at that time, but this was to be the first of 30 surgeries their little boy would endure before his 5th birthday.
They had been told early on this would be a relatively simple procedure. What the doctor had not anticipated, however, was that the hole next to the belly button that allowed the bowel to protrude, had since closed nearly shut - down to about the size of a pencil.
In surgery, the doctors were able to make that hole about three inches bigger, then inserted a sterile bag called a silo to hold the hole open and protect the exposed bowel. Each day the doctor would twist the bowel and place a twistie tie around it, causing it to shrink back inside Braxton's abdomen. Then, on day seven, the remainder of the exposed bowel went back in.
The baby was taken back into surgery to put a patch over the hole, and all seemed well. "But after that it just seemed like one problem after another," Cassie recalls.
Recovery takes an unforseen turn
Two months later, in January 2009, Braxton was taken back to surgery when it was discovered some of his small intestine had died. The surgeons began removing the dead organ, and by the time they were done only 22 centimeters of his small intestine remained. Cassie says a child that age should normally have about 400 cm.
The large intestine was then attached to the remainder of the small intestine, creating what is commonly known as "short gut". Braxton's gall bladder and appendix was also removed, and a feeding tube was inserted. Until then he had been fed through IV.
Braxton was two weeks old before Cassie and TR were able to hold him. He remained in the NICU for six months. He was 8-months-old when he was finally able to come home.
"When this was first diagnosed the doctor told us to anticipate maybe one or two months in the hospital," says TR. "But when his intestines died it became a whole new ball game."
Family adjusts to life at home
At one time, Cassie planned to go to school to become a nurse. Now she is a full-time nurse to her 4-year-old son. She gives him meds every two hours from 8 a.m. to 10 p.m. every day, except between 2 and 6 p.m. when he naps. "He's a good sleeper," she smiles.
Braxton has a central line near his collar bone through which his food source, total protein nutrition (TPN) is fed. He pulls around a little backpack on wheels which contains his TPN and is hooked to the tube that runs into his chest.
But to be around him for a mere five minutes, you would little know he was any different from any other 4-year-old. In fact, he is very intelligent and articulate, and hardly knows a stranger. He gets excited when talking about Dr. Mercer, who he calls his "short gut doctor", as he happens to really like that doctor.
Dr. Mercer is a doctor at the Intestinal Rehab Program (IRP). He and his team are one of only 10 teams in the country that do IRP, and one of only three transplant teams.
"This is where we need to be," says Cassie. "We are very thankful for Dr. Mercer and his team."
Braxton and his parents have settled into somewhat of a routine of care. It is a never-ending task to keep everything sterile, central line dressings changed and monitor Braxton nearly 24-hours a day.
"I have done lots of research, but I'm still learning something new all the time," says Cassie.
TR chimes in, "There are lots of times when we take Braxton in to the hospital and Cassie is showing the nurses what to do!"
Cassie explains that since a person's immune system is located in the intestine, technically Braxton is considered immune-suppressed. They have to be extremely cautious about exposing him to illness, so any time they go where they know lots of people will be they generally mask him. Cassie has to routinely check his temperature, and if it registers 101.5 or higher she immediately takes him to Omaha.
When asked if that has ever happened, Cassie just laughs, "Oh yeah, lots of times. It seems like anytime I have something planned or it's a holiday, he spikes a fever - and it's usually about 2 or 3 a.m. when we're heading to Omaha.In fact, this was our first Christmas at home!"
TR says he feels bad that Cassie generally has to take Braxton to Omaha by herself, as he has to stay home and work. "But with us being a single income household, I about have to," he adds.
Care continues - new challenges arise
Since coming home from the hospital, Braxton has had several "step procedures" and "taperings" done to increase the length of his bowel. He now has about 56 cm, so progress is being made. He also has the challenge of learning to eat, and be weaned from the TPN.
For the past two years, Cassie has made weekly trips to Omaha or Grand Island with Braxton for feeding therapy. In May, 2012, they began going to Grand Island for this therapy three to five times per week, and in October began going five days a week.
In this therapy, Braxton is learning the skill of chewing food and swallowing it. It was taking as long as 20 minutes for him to swallow one bite of food, but he has come a long way. He will now take a bit of food, chew it and swallow it in about five minutes. It currently takes about an hour for him to eat a full meal.
"Eating has been a battle since day one," says Cassie. "He has had so much negativity with his mouth - tubes, ventilator, etc. - that he has developed a defense behavior."
Cassie feeds Braxton five solid meals each day, of about 100 calories each meal. In order to completely get off the TPN, he must take in 1,500 calories and 50-60 ounces of fluid each day. And that is a goal the couple is racing against the clock to achieve.
You see, while the TPN is keeping him alive, it also causes damage to the liver. Right now, Braxton has stage IV liver failure from being on the TPN for so long. If he is able to get off of the TPN soon, the liver will heal itself. The worst case scenario would be that Braxton would require a transplant. Should that happen, they would transplant the liver, bowel and either kidneys or pancreas.
"The body accepts three organs easier than just one or two," Cassie explains.
"It's basically a race against time right now," adds TR.
Braxton was able to be taken off lipids this past week, which his parents say is a good step. Right now they are still trying to figure out just how much he will have to eat to stay alive. Right now his eating skill is rated at a 18-24-month-old level, and he needs to get up to a 4-year-old level.
"We are in a time crunch there too, as he has to go to preschool this year - he has to!", says Cassie.
TR runs a feedlot near Lexington, and also plays in a band on weekends to help make ends meet. He says he hates having to miss out on so much with Braxton, and praises Cassie for always being there.
"She has given up everything to take care of him," TR says. "She definitely should get mother of the year!"
The couple both say they have a large support system, which they are very thankful for. "Their words of encouragement are very helpful and appreciated."
Like most 4-year-olds, Braxton keeps his parents on their toes - you never know what he will say or do next. He loves to ride horses, and certainly doesn't lack for energy. In his cowboy boots, Wrangler jeans and black cowboy hat, the little guy is nearly a mirror image of his daddy.
When the interview was over, Braxton shook my hand and politely said, "Nice to meet 'ya." - then ran down the hall pulling his backpack as if on the back of a thoroughbred.
Nice to meet you too Braxton.