Getting Jaxon to Cincinnati

Jaxon was born on June 15, 2016. For most parents the birth of their first child is the most beautiful experience of their lives, for us it was a nightmare. When Jaxon was born the team of doctor and nurses delivering him all panicked when they realized he wasn't breathing on his own. He was placed on a ventilator where I first came to see that not only was he not breathing he was also born with a special little nose, he has a bifid nose. Something most nurses had never seen. He was transferred to the NICU where all sorts of test were performed on him. We were told after some time that he also had urinary reflux due to one of his kidneys not developing properly. He remained on oxygen for the next few days as we waited for the otolaryngologist to arrive and determine what was going on with our boy's breathing and his nose. The doctor discovered that he was born with a laryngeal web(his vocal chords were fused together)that created an airway obstruction which prevented him from crying and was the source of his stridor. We were immediately transferred to Joe DiMaggio's Children's Hospital for more careful observation. Seeing that he was able to slowly get off the oxygen and was also feeding well, after a few days the doctor decided it was best for him to go home and grow stronger before his surgery. He was discharged with a list of specialists to visit. Top priority, was a geneticist. He determined through blood work that Jaxon has a micro deletion in the 9th chromosome. Although the deletion is small (60kb) it has tried to stop Jaxon from being a normal boy. His right kidney is still small for his age but is growing at a steady rate. His urinary reflux is still present after 1 1/2 years but his urologist feels it's best to wait it out as long as he stays on his antibiotics he shouldn't have any infections. But his airway has been what has kept us in the operating room. We've had 5 surgeries due to his recurring web . The last and most extensive procedure was this past February. Jaxon was under complete sedation and intubated for 10 days in order to keep the web from reforming. After 15 excruciating days in the PICU we were sent home with our hearts full of hope that we had finally conquered this great little web of his. We had follow ups with his otolaryngologist which were filled with smiles and high fives, 4 months after surgery he was still happy with the results. On December 11, 2017 we had our most recent follow up in which he placed his small camera inside Jaxon's nose and down his throat. He proceeded to tell us that he could not see beyond Jaxon's vocal chords due to scar tissue that had formed. He suggested us going back to the O.R. in 6 weeks to evaluate his airway. The next step would be a tracheostomy. We were devastated when we heard this news considering the complications that could come.Tracheostomy-related mortality rates among children can be as high as 10% to 27%. That means that we have a 1 in 10, to 1 in 4 chances of losing our boy due to this procedure alone. But we are not giving up nor settling. We have been in contact with Cincinatti Children's Hospital. They're the leading airway specialists in the country and we are planning our first consultation within the next few weeks. We have gone this direction in hopes of a more innovative and less invasive approach to normalize Jaxon's airway. For the last year and a half our family has survived solely on Jaxon's fathers income. Due to his medical issues, primarily his sensitive airway, Jaxon is unable to attend daycare which leaves mom with the inability to return to work. With all of these procedures, operations, hospital stays and doctor visits, Jaxon's father has exhausted all accumulated paid leave time at work. Jaxon will become a big brother on or before January 2, 2018 making us a family of four which makes it difficult for mom to travel to Cincinatti alone with both boys, dad needs to be there not only to help with them but to make medical decisions together. Although Jaxon has medical insurance, we ask you kindly to help finance our trip to Cincinatti to resolve Jaxon's airway obstruction and help our family pay our expenses while being away and out of work. This will allow us to focus solely on Jaxon's health and recovery.  
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  • Yesenia Ramirez 
    • $30 
    • 40 mos
  • Maria Zayas 
    • $100 
    • 42 mos
  • Anonymous 
    • $20 
    • 43 mos
  • Fiorella & Jose Peña 
    • $200 
    • 43 mos
  • Victoria Paredes 
    • $20 
    • 44 mos
See all

Organizer

Pedro Hernandez 
Organizer
Hialeah, FL
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