My story is two-fold. I resigned from my position as a Labor & Delivery nurse with the plans to start a new position 4/24/2017. After my resignation, some health issues I had been dealing with for over 2 years got worse. It led to me having to have surgery 4/28/2017. Because I had to have surgery, I was unable to start the new job. Two days after coming home from the hospital, Aiden got sick.
Here begins the second part of our story. When I was pregnant with Aiden, the doctors found what they called a lung mass. After having ultrasounds every week for about 6 weeks, this “mass” quadrupled in size and they sent me for a fetal MRI. The radiologist called my husband and I into a private room once they reviewed the images and explained that Aiden had a pulmonary sequestration. My pregnancy was already “high risk” because of a previous premature delivery and this diagnosis of my unborn babe complicated my pregnancy even further. Following this diagnosis, and the fact that I had been having contractions daily since I was 17 weeks pregnant, we were sent to see more specialists.
We spoke with a pediatric surgeon that gave us the worst case scenario. “He may not be able to breathe at birth and we will have to perform emergency surgery to remove the sequestration. Or, he may be fine and we may be able to do the surgery once he is 3-4 months old.” We also met with a neonatologist, NICU nurses, and took a tour of the NICU at the hospital where we would deliver. The neo gave us the same worst case scenario, but ended with a glimmer of hope. According to him, people can, and have, “lived their whole lives and this not present as a problem until they are in their 70s-80s. We will all be present at delivery and will make our decision on his performance when he is born.”
At delivery, Aiden came out screaming at the top of his lungs. Tests were run and we were told there was no need to have an emergency surgery, or any surgery at all, at that time. The doctors did tell us he would be followed closely for the first year. He has been fine up until now.
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He started school at the end of August 2016. He started getting frequent upper respiratory infections and bronchitis. He would miss approximately 4 days of school every 2 weeks because he got sick so frequently. On May 2, 2017, he woke up with a bad cough and crying. He said his back hurt. He had fevers as high as 105. When we took him to the ER he was diagnosed with pneumonia. We received a prescription for antibiotics and were sent home. But he never got better.
We took him back to an urgent care, because I had still not been cleared to drive following my surgery, and we were told the pneumonia was still there. Everyday for 5 weeks he ran a fever. We finally took him to Children’s Medical Center and tests were run. We were told that he had a pulmonary sequestration and it was infected and inflammed. We were admitted into the hospital and were there for 8 days. During that time, Aiden was getting antibiotics 5 times daily and had a total of 5 IVs.
The surgeons refused to operate because they didn’t want to risk the infection spreading into his blood stream. The surgeon, pulmonologist, and infectious disease doctors all felt it would be best to send him home on IV antibiotics. He got a PICC line placed and 2 days later we were discharged home. He is still receiving antibiotics, but only 4 times daily. He has a home health care nurse who comes to see him once a week. The plan is for him to have surgery sometime at the end of July or the first week of August.
This page has been created because we need help. My husband had been unemployed for almost 1 year. Shortly after beginning in his new position all of this started. Because of the frequency of Aiden’s medications, I am unable to work at this time. We are prayerfully asking for your help and we thank you in advance.