She continued to have complications, and was dealing with a central line called a TPN that delivered nutrition directly to her heart. TPN lines, Frank said, are dangerous and must be handled with caution. Any mistakes in handling could result in infection, and with a patient so young and vulnerable, such a mistake could be fatal.
At this point, the most pressing concern was a dirty one.
“The biggest issue is pooping,” she said.
Because Elea lacked the amount of small intestine most kids have, her bowel movements were many. And because the stool that emerged didn’t have the normal filtration a normal small intestine can give it, it was highly acidic. That acid is hard on Elea’s bottom, which means her caregivers have to be on constant alert for diaper rash.
They also had to monitor her stool for changes in color, consistency or frequency because changes in any of those could be clues to problems in her body. A tough job, for sure.
By May 2012, she still wasn’t thriving at home, so Frank sought answers. The advice she got was to take Elea to the University of Nebraska Medical Center in Omaha that specializes in this condition. They went, and not only did they get the help they needed, but they also enrolled Elea in an eating therapy program so intensive and so comprehensive that it comes with a price tag of between $50,000 and $80,000.
The eating therapy helped, as did the Nebraska doctors, who were able to stabilize Elea’s digestive progress. Perhaps most importantly, the Nebraska doctors were able to detect and treat an infection in Elea’s TPN line early enough that it didn’t cause her much trouble. By November, that TPN line was removed.
Today, she’s well on her way to recovery. Development wise, she’s behind her twin sister. But the two are working together to catch Elea up.