Zoey Moore
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September 17, 2000
Zoey is a 27 1/2 week preemie who, on October 2, 1997, was born partially at home and was breech. Her head was lodged in the birth canal for approximately 20 minutes, until the ambulance reached the hospital. She was intubated for 54 days following birth, due to bulbar palsy. She had no swallow, suck, or gag reflexes. She also suffered from bpd and severe reflux. She had a Nissan fundoplication, hernia repair, and g-tube insertion while in the nicu.
At three months of age she was transferred to a children's rehabilitation home due to low oxygen desaturations caused by mucus plugging in her airway. After 3 months there, she was finally stable enough to come home. This was in March of 1998. She came home for a weekend for and discharge was scheduled for the following Wednesday.
Unfortunately, she was rushed to a nearby picu for severe respiratory distress and placed on a ventilator. She was diagnosed with RSV, even though she had had the respigam infusions that year. A few days later she was placed on an ossilator. Saturday, she was placed on ECMO for respiratory failure. She was taken off of ECMO after ten days and was doing quite well.
After being taken off of ECMO, Zoey began having seizures. An MRI found she had bilateral subdural hematomas and surgery was performed.
After a few failed attempts at extubation, we were told that one more failed attempt and we would need to start thinking about other options. She was successful this time.
After a week or two, she was transferred back to the rehab home, still dependant on oxygen, and once again we began to work toward discharge.
May 18, 1998, Zoey was discharged home. She required frequent oral suctioning and oxygen. She was on Phenobarbital, breathing medications, and she was tube fed. WE had nursing care every night, and she received occupational and physical therapy.
In October 1998, Zoey began to have respiratory distress and was admitted to the hospital for 3 days. She once again had RSV. Two weeks after she was discharged, November 9, Zoey stopped breathing and rescue breathing was performed by her nurse and 911 was called. She was admitted into PICU. After a short while she was moved to a pediatric floor. She was discharged home the day before Thanksgiving, but we went back because of low oxygen saturation's the day after Thanksgiving.
She was bumped up to 4 liters of oxygen and we were moved to the rehabilitation floor for a minimum of two weeks, long enough to get her oxygen requirement down and make sure she was stable. We were discharged December 21, 1998.
On February 8, while getting ready to leave for a doctor's appointment of Zoeys because she once again had a cold, Zoey began to have a difficult time breathing. Because of her inability to swallow, and the large quantities of secretions, we once again had to call 911. We were just not capable of keeping up with suctioning, and guess what she had? RSV. She was transferred to picu again and intubated. After five weeks on a vent, and unsuccessful attempts, it was decided that she would get a tracheotomy. On March 1, 1999, Zoey had surgery.
Three weeks later, she was discharged home, without oxygen!
Since her tracheostomy has been placed, she has been admitted to the hospital two times, a one week stay for psuedomonas in June of 1999, and another in September of 2000 for the paraflu (notice the long stretch there) and has just taken off developmentally.
Because of her secretion problem, she refuses to leave an artificial nose on and would rather cover the opening of her trach with her finger or talk around it than wear a passy-muir valve, but, we decided to give her her own way on that. She had some swallowing therapy and did eat a little by mouth for a short time, but winter came, and her eating by mouth just is not worth the health risk with her lungs the way they are, so she did lose the little swallow she had gained.
She is three now, and she runs and speaks a little; she has a hard time opening her mouth because she has very spastic muscles in her cheeks. She is still on phenobarb and breathing meds, still monitored, still requires frequent suctioning (although her cough is getting alot better), and we still have oxygen for occasional prn usage.
We are going to wait until she is a little older and understands a little better before we try the swallowing stimulation again because she is still developmentally behind, but to watch her stomp her feet and scream "NO!" because she doesn't want to pick up her toys, take a nap, or sit in her high chair for a meal is very heartwarming:)
Update: September 2001 - Zoey was hospitalized in March of 2000 and put on an ossilator due to respiratory failure. The cause was believed to be urosepsis. After a two week long hospital stay, she was discharged home. She is doing great and is currently getting preschool at home. She is walking, and talking and counting and, well, she is being a four year old:)
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Update October 2002 - Zoey has been doing very well. She recently started preschool at a communication based preschool and her vocabulary has just taken off. She still has her trach and there are no plans to extubate in the near future.
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