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Feb 14, 2018 Latest post:
Mar 19, 2018
Welcome to our CaringBridge website. Mark and I are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement for Yana, Danny, Mark, and myself. Thank you for visiting.
Miriyana Sapphire Paulson (Yana) is our wished for child. She is a beautiful force of nature and possesses a very strong voice. She was also born with a bronchogenic cyst, which was diagnosed in utero. This cyst is located behind her trachea, where the trachea splits into the right and left main bronchus. The cyst is about one inch in diameter and is compressing part of her left airway. In December, she caught a cold, which quickly progressed into bronchiolitis, and subsequently, bacterial pneumonia. She was hospitalized at Lucile Packard Children's Hospital (LPCH) from December 22-December 31, where she required a substantial amount of respiratory support. She improved rapidly once we got her home and a CT was scheduled in February to determine whether the cyst was contributing to the severity of her respiratory problems.
Unfortunately, she caught another cold on Friday, February 2. By Sunday morning, we were in the Emergency Room at El Camino. By Sunday night, we were in the Emergency Room at Stanford. By Monday, she had been admitted to the Pediatric Intensive Care Unit (PICU) at LPCH, where we have been ever since. Originally diagnosed with croup and bronchiolitis, she was also showing some signs of reactive airway disease (RAD), which is similar to asthma. She had increased work of breathing, which deteriorated into respiratory failure. She was intubated and has been on a ventilator to breathe since Monday, February 5. This requires her to be on a fairly high level of sedation to keep her from pulling out the tube. Since then, they have treated her for the aforementioned conditions, plus another bacterial pneumonia, and by Wednesday, February 7, sepsis.
On February 10, a medical team took Yana for a CT scan. This scan revealed the exact location and size of the bronchogenic cyst, and this information revealed that this cyst has been exacerbating Yana's respiratory issues and will need to be surgically removed. On February 13, a pulmonologist performed a bronchoscopy and took pictures of the inside of Yana's trachea, showing the extent of airway compression caused by the bronchogenic cyst. The next step will be to talk to the team of surgeons. Ideally, they will be able to use a minimally invasive technique to remove the cyst in about 6-8 weeks.
Yana is now past the worst of the initial virus, and the antibiotics for the bacterial pneumonia and sepsis have finished their 7-day course. She still is dealing with some wheezing and secretions, but is generally at a stable place. Unfortunately, there is quite a bit of resulting damage to her lung tissue, which she has not yet recovered from. She is on a fairly high level of support from the ventilator and is not yet at a point where she can be extubated. Also, there are some additional factors that must be taken into consideration now that she has been on sedation for so long. She must now be weaned gradually off these medications so that she does not experience withdrawal symptoms.