Born: August 12, 2006
Illness: Prematurity, Chronic Lung Disease/Tracheal Malacia/Pulmonary Hypertension
Theme of Quilt: Disney Princesses
Kiera was born at 28 wks and 1 pound 8 ounces by emergency c-section to save her life. She had not grown properly in-utero due to a placental problem and lack of blood flow, and, thus, had severely underdeveloped lungs. After catching a lung infection while in the NICU at day 11, she started a roller coaster ride of illnesses and the long journey towards discharge. She remained chronically intubated and on a ventilator until she was finally able to safely receive a trachiostomy surgery at 6 months old, having never yet gone home from the hospital. She remains on a ventilator with a trach tube.
Two weeks after her trachiostomy, things went from bad to worse. Kiera had developed an enlarged heart and pulmonary hypertension caused by her bad lungs. This cause her heart to stop or "code." Due to the critical nature of her heart disease and lung problems, she was then placed in a sedative coma for 2 1/2 weeks, and we were told she had less than a 30% chance of survival. She started some experimental medications that saved her life, and her heart slowly repaired itself. She has spent at least 4 other times in her life in a sedative coma, the last being most recently in March 2009 when she caught Influenza A.
Her hospital journey continued while being unable to wean ventilator settings sufficiently to transfer to a home vent and come home. We reached a point after multiple sedative comas that lung transplant seemed our only option, so we traveled with her by medical transport to Houston to investigate the lung transplant option. Miraculously, after new ENT's assessed her status and changed her trach tube type, her airway repaired itself enough to postpone the need for transplant, so after 5 weeks away from home, we were able to return to our home town hospital and FINALLY discharge HOME 2 weeks later resulting in a total consecutive hospital stay of 514 days or 17 months.
Kiera has since then had 7 re-admissions to the hospital. Simple colds can set her back in her lung status. We are currently attempting to wean the ventilator further, although a cold the last few weeks set us back again. She remains on a home ventilator with high accuity care neccessary, but she is very active. We like to take her to the aquarium and zoo, and she LOVES to watch Little Mermaid, Beauty and the Beast, Aladdin, and Cinderella. She is finally starting to attempt walking without her walker or holding onto something reaching as many as 10 steps unassisted, and is now 3 years old. She still has a long way to go, but you see how far she has come. She is a tough little fighter full of love with the biggest smile you have ever seen.
