Our Inspiration
' He has shown us as parents what it means to be strong. '
Caysen was born on August 8, 2020 at 36 weeks gestation after his mom suffered a chronic placental abruption. Almost immediately following his birth, Caysen began showing signs of respiratory distress with his oxygen SATs dropping to 21% requiring intubation. He spent a week in the NICU before graduating and going home.
When Caysen was 3 months old he was diagnosed with pneumonia which never really seemed to subside. His symptoms would begin to improve on antibiotics but once the round was completed they returned. This went on for months until he was hospitalized in May 2021 with Bronchiolitis and pneumonia. He was referred to a Pulmonologist where he underwent different testing (genetics and Bronchoscopy). These tests diagnosed him with a rare genetic condition called Primary Ciliary Dyskinesia (PCD). PCD is a condition in which the cilia lining the respiratory tract don’t function properly therefore making airway clearance very difficult. As the presentation of PCD is similar to Cystic Fibrosis, they are very different conditions.
' PCD is a condition in which the cilia lining the respiratory tract don’t function properly... '
Around this same time, Caysen began having episodes concerning for seizures. He would have upper body tremors along with “zoning out” for periods of time, being unable to regain his attention. After several of these episodes, Caysen was referred to see a Neurologist. After having one of these episodes in front of the Neurologist, she agreed they were concerning for seizures and decided to order further testing. Caysen underwent an EEG and an MRI due to his birth history of hypoxia. While the EEG came back normal, the MRI told a different story. Caysen was diagnosed with a Chiari 1 Malformation and Hydrocephalus. Things really sped up from here. Chiari Malformation is a skull deformity in which the back of the skull is too small for the posterior brain. It causes the brain to herniate into the spinal canal compressing the brain stem and blocking the flow of cerebral spinal fluid (CSF). There are many different degrees of herniation but the only way to help relieve symptoms is to do surgery. Hydrocephalus is a build up of cerebral spinal fluid (CSF) in the brain. This can begin to add pressure on the brain itself and can be life threatening when not addressed.
Caysen was referred to a neurosurgeon to discuss brain surgery. As parents, the idea of brain surgery on your child is traumatizing. Surgery is determined based upon symptoms. Caysen’s symptoms included: global developmental delay, hypotonia, headaches, vomiting, difficulty swallowing, and seizures. Because of the severity of his symptoms and the impact they were having, Caysen was deemed qualified to undergo Chiari decompression surgery. This surgery was performed at Phoenix Children’s hospital by Dr. Ronecker on 8/13/2021. It is done by removing a part of the occipital skull and placing a patch over the dura layer of the brain. A laminectomy (removal of part of the C1 vertebrae) was also performed. The goal is to make more room or “decompress the compression” occurring at the back of the brain. It is one of the most painful neurosurgeries performed.
' Caysen underwent his 3rd brain surgery... (He) spent 2 weeks in the Pediatric Intensive Care Unit (PICU)... '
Following his surgery, Caysen began having complications including chemical meningitis as well as a CSF leak. On 9/1/21, he underwent a 2nd brain surgery for the placement of an external ventricular drain (EVD) to help drain the additional CSF and allow further healing of his incision. This is a catheter placed in the lateral ventricle of the brain and is connected to a bottle for the fluid to drain into. Unfortunately, despite the efforts of the EVD, Caysen continued having CSF leaks which left us with no other option but to place a Ventriculoperitoneal (VP) shunt. Caysen underwent his 3rd brain surgery for the placement of the VP shunt. This is a more permanent form of the EVD and is internal instead of external. The VP shunt was inserted into his right lateral ventricle and runs down behind his right ear and ends in the peritoneal cavity in the abdomen where the fluid is drained. The shunt is programmable and the settings are changed using a magnet. Caysen spent 2 weeks in the Pediatric Intensive Care Unit (PICU) during this time.
In October 2021, Caysen was readmitted into the hospital twice for failure to thrive. His caloric and fluid intake were only meeting 30% of his daily intake goal. After spending a week to bring up this intake with no success, a nasogastric (NG) tube was placed. This is a feeding tube placed into the nose that travels down and ends in his stomach. It allows him to be fed through the tube versus by mouth. After being discharged, Caysen removed the NG tube on his own and absolutely refused to keep it in place which ultimately led to him needing a gastric (G) tube. A g-tube is placed surgically directly into the stomach. A tube is then connected to the “button” to feed through. During this surgical procedure, he also had a Nissen fundoplication done. This is a procedure that reduces GERD by tightening the opening of the esophagus. During these hospital stays it was also determined his shunt was over-draining requiring an adjustment on the valve settings.
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In February 2024 Caysen underwent an endoscopy to try and find answers as to why he struggles so much with eating. Soon after the procedure, the medical team met with us to discuss the prilimnary findings that were concerning for Eosinophilic Esophagitis (EoE). This diagnosis is made definitively with biopsy results so the wait was on. After approximately 1.5 weeks we received he call confirming this diagnosis.
EoE is an immune response in which the body’s immune system attacks the esophagus anytime certain allergens are consumed/inhaled. Typical allergens are dairy, wheat, soy, peanuts, etc. It is important to know this is NOT your typical food allergy response you always hear about. The ones we’re all most familiar with are an IgE immune response causing an acute (fast) reaction. With EoE it is a chronic food allergy that is IgA driven and occurs over time. Although we have not yet figured out what Caysen’s food/environmental triggers are, we are happy his EoE has been well managed with medication. The doctors were hesitant to remove any food groups from Caysen’s diet considering he already doesn’t eat well on his own and is failure to thrive. As of now, they don’t see the need to remove any foods from Caysen’s diet which is great news! Caysen is now taking Dupixent, a bi-weekly injection, to reduce inflammation within his body. So far, we have seen great results in Caysen’s eating and weight gain.
Caysen is such a warrior. He has shown us as parents what it means to be strong. He is such a happy little boy despite the ongoing challenges he faces. While he is still behind on his milestones, he continues to work hard to meet them. He is resilient. He is our inspiration.