Jaxson Sabino, Born December 29th, 2014, Piscataway

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Written by Shawn Sabino, Jaxson's dad.....

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 broke. She was immediately admitted to the hospital that day where she spent the next 5 weeks on bedrest. 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 10:30am 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. 

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 I 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 I for about one month. During that month everything seemed perfectly fine with Jaxson.  Growing, smiling, playing, just being a healthy baby.   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. 

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 preformed 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. 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 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 May 6th 2015. That date could change.

When Jaxson comes home he will need nursing care for 16 hours a day. 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 I. This will 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 cutback as many expenses as possible to prepare and help with all the extra bills.

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, with this situation I feel I’m in over my head. Any help is truly and deeply appreciated by Mindy, Jaxson, and I. Thank you from the bottom of our hearts for anything that you can do for us. 

Mindy and I also tried to reach out to News 12 NJ to show our appreciation for the first responders who helped saved my son’s life.  The story links are below.  

UPDATE

While at Children’s Specialized Hospital his family received education about caring for Jaxson with his tracheostomy and monitoring him for seizure activity. Now, almost a full year later, Jaxson is off all of his medications and had his trach removed on March 22nd 2016. He’s doing fantastic without his trach. We’re so excited to fi nally take this last step in Jaxson’s journey. It’s been such a long and stressful year.

Steps has helped us out so much in the past year, not only financially but mentally as well. Courtney and other families from Steps have reached out to us with their words of encouragement and hope. We made friends with some of the families that are a part of Steps. Financially we didn’t have to worry about how we’re going to pay our medical bills while also paying for Jaxson’s doctor’s appointments, and medical supply. This was such a relief for us as I was the only one working at the time. Thank you everybody for the support. Words cannot express our gratitude

 

 

HOW CAN I HELP THE SABINO FAMILY?

  • Click here to help offset Jaxson's medical costs by making an online donation direct to The Sabino Family.  This donation is not tax deductible as it does not go through Steps Together.   
  • Follow Jaxson at www.instagram.com/jaxsonsjourney or @jaxsonsjourney
  • Host a fundraiser and contact Steps Together to have it detailed on this page.
  • Click here to make a tax deductible donation to Steps Together.  Steps Together is a Hillsborough based 501(c)(3) organization that assists families in our community facing a medical crisis.   Steps Together assists all the families we detail.