No offense to any of the other beautiful babies in the Ranken Jordan Nursery, but Olivia is by far the most fashionable. Toes and fingers always bright with fresh colorful polish, plenty of chic outfits, and she is never seen in public without a big, beautiful bow on her head that, except when it falls down over her eyes, perfectly complements her engaging smile. And, Livy and her mom head up the morning wake-up patrol, splashing in the tub to tunes like, “Eighteen Wheels on a Big Rig” that just seem to get the day off to a good start. It puts everyone else in the room in a good mood too. Then she is ready for whatever is on the schedule for the day: infant massage, therapy, a visit from her big brother, or sometimes a trip to one of her many specialists. You see, life hasn’t always been so cushy for Olivia. Not that any of us would trade places with her. Few of us would choose to be in the hospital instead of at home, much less hooked up to a ventilator and dependent on tube feedings for nutrition. But she is on Easy Street compared to what she has been through in her life so far.
Born with Down syndrome, she went from the NICU to the PICU when she was found to have life-threatening congenital heart and airway defects. Unfortunately, the open-heart surgery that was supposed to fix the problem opened the door to a cascade of related problems, each potentially more ominous than the last. Heart problems caused lung problems. Lung problems set her up for infection. Antibiotics for the infections caused GI problems. Poor nutrition slowed her growth and development making her all the more susceptible to the next setback. Her first six months were spent in the ICU with her parents in a near perpetual state of angst and uncertainty. More than once they were told she might not live through the night. Rather than let her die in the hospital, her parents did everything they could to get her home. After intensive training and weeks of planning, they took her home in mid-November. The home nurses were overwhelmed. Her condition deteriorated and she was readmitted within three days. A second attempt a month later was even shorter.
It took a lot of convincing for Mom to believe that this sort of medical limbo is where many Ranken Jordan patients come from and that Livy could benefit from the kind of transitional support we specialize in. She would tell you herself that she wasn’t really convinced until she started to see the results with her own two eyes. They were subtle changes at first. Scary “spells” consisting of fussiness, then blueness, and sometimes life-threatening respiratory decompensation became less frequent and severe. Her dependence on intravenous nutrition diminished and she responded ever more positively to her mother’s touch. New problems still came along, frustrating and seemingly endless but she gradually overcame these as well. Unexplained and uncomfortable abdominal distension that disrupted her ability to tolerate feedings slowly subsided. She eventually started to gain weight and came to require less support from her ventilator. She spent more and more time smiling, alert and interactive, rewarding her family’s resolve to give her a chance to thrive.
She has taken full advantage of her time at Ranken Jordan. Like a diligent student who has worked hard and persevered despite many challenges, she graduated with honors and got to go home this week, this time with a good prognosis to a well prepared home setting and to a family whose fears have been replaced by optimism.
Carpe diem, Olivia!
by Dr. Nick Holekamp, Chief Medical Officer