Jaxson Sabino
JAXSON SABINO’S Story written by his Dad, Shawn
My name is Shawn Sabino. This is the story of my son Jaxson’s journey. It all started with my wife Mindy, who at the time was 29 weeks pregnant, when she noticed that her water had broken. She was immediately admitted to the hospital that day when she spent the next 5 weeks on bed rest. During those 5 weeks, she and Jaxson were constantly monitored. After spending 3 weeks in the hospital, Mindy’s C-section was scheduled for 12/29/14. Jaxson David Sabino was born on 12/29/2014 at 10:30 am, Jaxson was a preemie at 34 weeks weighing 4.6 pounds.
Jaxson was in the NICU (neonatal intensive care unit) for 3 weeks. In those 3 weeks, he had to maintain his body temperature
and feed from the bottle, which he did successfully.
Bringing Jaxson Home
On January 21st, we were able to bring Jaxson home. During all this time I was back and forth between hospitals also visiting my grandfather every day, Jaxson’s great-grandfather, Arthur Sabino Sr. My grandfather was living with Mindy and me until he couldn’t take care of himself, and we found out that he had pancreatic cancer. He had to be placed in a nursing home. 2 months later, my grandfather passed away, the same day we brought my son home from the NICU.
Jaxon was home with Mindy and me for about one month. During that month, everything seemed perfectly fine with Jaxson. Growing, smiling, playing, just being a healthy baby.
Emergency at Home
Then on February 26th Mindy was feeding Jaxson when he began to throw up. Soon after that, Jaxson stopped breathing and turned blue. Mindy was on the phone with me at the time, and I quickly hung up and called 911. Mindy began CPR on Jaxson and was able to resuscitate him. Moments later, he stopped breathing again, right as the police officer came into the house. Officer Raymond Pilch resuscitated Jaxson for a second time. Jaxson was then rushed to St. Peters University Hospital in New Brunswick, NJ.
Our story was actually shared on:
Mindy and I also tried to reach out to News 12 NJ to show our appreciation for the first responders who helped save my son’s life.
ENT Intervention
At the hospital, Jaxson had multiple episodes of desaturations and apnea. After multiple failed attempts at intubation, an ENT (ear, nose, throat doctor) was consulted and performed an emergency tracheostomy that night.
Mindy and I were terrified as we were told that Jaxson may not survive the surgery. The next day Jaxson was placed on an E.E.G. monitor where initial results showed severely decreased voltage. On 3/6/15 Jaxson was having frequent electrographic seizures off Versed. On 3/7/15 he had multiple electrical epileptic seizures. Currently, Jaxson is on 4 different anti-seizure medications. Phenobarbital, Onfi, Keppra, and Topamax.
Genetic Testing
Additional genetic testing was done on 3/13/15 the day before discharge to Children’s Specialized Hospital. It will take 2-3 months to receive genetics testing results.
While at Children’s Specialized Hospital, we are getting an education about caring for Jaxson with his tracheostomy and monitoring him for seizure activity. His other goals are to gain weight, grow, and maintain nutrition. Jaxson will be at Children’s Specialized Hospital for 6-8 weeks. Jaxson is scheduled to come home on May 16th, 2015. That date could change. When Jaxson comes home, he will need nursing care for 16 hours a day.
Returning to Work
My wife was scheduled to return to work on March 30th, 2015, but now needs to stay home to care for Jaxson. We’re not sure if or when she will be able to return to work. I’m going to be the sole provider for Mindy, Jaxson, and me. This will be hard on us since my paycheck will be paying for a home mortgage, two cars, two phones, gas/electric, etc. Not to mention the ever-stacking co-payments for Jaxson and Mindy’s stay in the hospital. I’ve cut back as many expenses as possible to prepare and help with all the extra bills.
Finding Answers
Mindy is currently on FMLA (Family Medical Leave Act) through her job until June. We don’t think she will be going back to work in June with everything going on. We hope, and we pray, that Jaxson comes home soon. We also hope we find an answer to Jaxon’s seizures with the genetic testing in place. This all has been very difficult for my wife and I. With my grandfather who raised me since young passing away, Mindy in the hospital for 5 weeks, and everything that has happened to Jaxson. I’m not the type of person to reach out for help. I’m used to taking care of my own responsibilities, but with this situation, I feel I’m in over my head. Any help is truly and deeply appreciated by Mindy, Jaxson, and me. Thank you from the bottom of our hearts for anything that you can do for us.
UPDATE
As of March 22, 2016, Jaxson had his tracheostomy removed. He went home 2 days later. He is doing so well! We are so thankful for how healthy our son is after this rough past year. We are so thankful to Jack’s Kids for giving us support by reaching out, visiting us, and giving us gift cards to help when times are tough. We truly appreciate everything you have done.
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