Jaxon's Journey
Donation protected
Jaxon's Journey began in January, in the NICU minutes after he was born. Excited to be a first-time Grandma and meet my 1st grandson, my emotions were taken over by sadness, worry, and concern. As I listened to the NICU doctor list off quite a number of things that were wrong with Jaxon, I couldn't bear the thought that the doctor didn't think Jaxon would survive the next 24 hours. Faith and belief overtook our family as we prayed for a miracle. Our little fighter made it through the night and proved the doctors wrong! Here's the story of his journey so far.....
(Picture in the NICU)
Jaxon was born weighing 4 lbs., he could not breathe, suck, or swallow on his own. He needed oxygen and a feeding tube and that was just the start of his continued medical care. At 3 weeks old, he underwent airway surgery. At 7 weeks, he underwent 2 more surgeries, G-tube placement (feeding tube) and Nissen Fundoplication (stomach wrapping). Over the next couple of weeks, he recovered from his surgeries and came off the ventilator to an oxygen machine. He was now able to come home to be with his Mommy & Daddy along with oxygen, monitors, nebulizer, and feeding tube. It's hard enough becoming first-time parents, let alone watching my daughter, Briana, and son-in-law, Patrick, basically become NICU nurses as their home filled up with medical equipment. Monitors going off constantly, sleepless nights, daily routines of charting, oxygen, nebulizers, lung stimulation, suction machine, 24-hour continuous feeding, medications, sleep apnea, etc... etc.....
(Picture at home)
After 8 weeks of being home, Jaxon took a turn and was rushed to the Emergency Room. Jaxon's lung had collapsed and he had emergency surgery. Jaxon was admitted to the hospital for over a month. During that stay, he underwent 3 additional surgeries, 2 airway and 1 neurosurgery (decompression of his spine and skull). Jaxon's case became very complex. There has been no exact diagnosis. Testing and more testing (MRI's, X-rays, ultrasounds, EEG, EKG, CAT Scans, scopes, sleep studies, etc) led Jaxon to the need to be seen by some of the top doctors/specialists during this stay ....how can so many things be wrong?? Jaxon continues to follow-up with an unimaginable list of doctors including Endocrinology, Pulmonology, Audiology, Cardiology, ENT, Genetics, GI, Kidney Disease, Neurology, Neurosurgery, Ophthalmology, Pediatric Surgery, Urology, Pediatrician, and sleep medicine, in addition to needing several therapists (OT, PT, Speech, Hearing Development, and Dietician).
(Picture in the PICU)
This all became overwhelmingly difficult as only one parent was allowed to be with him due to COVID. After over a month of being away from his Daddy and family members, my daughter and Jaxon were able to return home, still on continued oxygen, High Flow machine, nebulizer, monitors, suction machine, and feeding tubes along with countless trips to the hospital, doctor's offices, and telemedicine. Jaxon was also diagnosed with severe hearing impairment/sight loss and will need hearing aids and specialty glasses. Unfortunately, surgeries still lie ahead for Jaxon in the upcoming months.
With all of Jaxon's needs and constant care, my daughter is unable to return to work. Due to the extreme medical costs, therapies, medications, home respiratory support, travel expenses, special formulas, electric bills from running 24/7 machines, etc... I have started this GoFundMe to help ease the financial burden and stress that accompanies that burden as well as the costs that insurance does not cover.
In summary:
Jaxon is 8 months old and has had 8 surgeries +
Jaxon takes 6 daily medications +
Jaxon has spent over half of his life in hospitals +
17 Doctors/Specialists +
5 Therapists +
Hearing Aids +
Specialty Glasses +
Special Formulas
_________________________________________________________
Amongst all these obstacles, Jaxon is a content, strong, and brave little sweetheart! He smiles, laughs, continues to make progress, and defies the odds. Jaxon is very aware of his surroundings - checking out everything the doctors/nurses are doing to him....."what is this red light on my foot"??
As a Grandmother, it breaks my heart seeing my daughter, son-in-law and grandbaby go through this daily with no real answers/diagnosis. I struggle with the frustration that there is no easy fix, but I can help them, love them, support them, and pray for a miracle! If you choose to donate, any amount will be greatly appreciated that will help them in the battle to fight for Jaxon's well being.
(Picture in Mommy & Daddy's arms)
With Sincere & Deepest Thanks,
Grateful Grandma Jan
(Picture in the NICU)
Jaxon was born weighing 4 lbs., he could not breathe, suck, or swallow on his own. He needed oxygen and a feeding tube and that was just the start of his continued medical care. At 3 weeks old, he underwent airway surgery. At 7 weeks, he underwent 2 more surgeries, G-tube placement (feeding tube) and Nissen Fundoplication (stomach wrapping). Over the next couple of weeks, he recovered from his surgeries and came off the ventilator to an oxygen machine. He was now able to come home to be with his Mommy & Daddy along with oxygen, monitors, nebulizer, and feeding tube. It's hard enough becoming first-time parents, let alone watching my daughter, Briana, and son-in-law, Patrick, basically become NICU nurses as their home filled up with medical equipment. Monitors going off constantly, sleepless nights, daily routines of charting, oxygen, nebulizers, lung stimulation, suction machine, 24-hour continuous feeding, medications, sleep apnea, etc... etc.....
(Picture at home)
After 8 weeks of being home, Jaxon took a turn and was rushed to the Emergency Room. Jaxon's lung had collapsed and he had emergency surgery. Jaxon was admitted to the hospital for over a month. During that stay, he underwent 3 additional surgeries, 2 airway and 1 neurosurgery (decompression of his spine and skull). Jaxon's case became very complex. There has been no exact diagnosis. Testing and more testing (MRI's, X-rays, ultrasounds, EEG, EKG, CAT Scans, scopes, sleep studies, etc) led Jaxon to the need to be seen by some of the top doctors/specialists during this stay ....how can so many things be wrong?? Jaxon continues to follow-up with an unimaginable list of doctors including Endocrinology, Pulmonology, Audiology, Cardiology, ENT, Genetics, GI, Kidney Disease, Neurology, Neurosurgery, Ophthalmology, Pediatric Surgery, Urology, Pediatrician, and sleep medicine, in addition to needing several therapists (OT, PT, Speech, Hearing Development, and Dietician).
(Picture in the PICU)
This all became overwhelmingly difficult as only one parent was allowed to be with him due to COVID. After over a month of being away from his Daddy and family members, my daughter and Jaxon were able to return home, still on continued oxygen, High Flow machine, nebulizer, monitors, suction machine, and feeding tubes along with countless trips to the hospital, doctor's offices, and telemedicine. Jaxon was also diagnosed with severe hearing impairment/sight loss and will need hearing aids and specialty glasses. Unfortunately, surgeries still lie ahead for Jaxon in the upcoming months.
With all of Jaxon's needs and constant care, my daughter is unable to return to work. Due to the extreme medical costs, therapies, medications, home respiratory support, travel expenses, special formulas, electric bills from running 24/7 machines, etc... I have started this GoFundMe to help ease the financial burden and stress that accompanies that burden as well as the costs that insurance does not cover.
In summary:
Jaxon is 8 months old and has had 8 surgeries +
Jaxon takes 6 daily medications +
Jaxon has spent over half of his life in hospitals +
17 Doctors/Specialists +
5 Therapists +
Hearing Aids +
Specialty Glasses +
Special Formulas
_________________________________________________________
Amongst all these obstacles, Jaxon is a content, strong, and brave little sweetheart! He smiles, laughs, continues to make progress, and defies the odds. Jaxon is very aware of his surroundings - checking out everything the doctors/nurses are doing to him....."what is this red light on my foot"??
As a Grandmother, it breaks my heart seeing my daughter, son-in-law and grandbaby go through this daily with no real answers/diagnosis. I struggle with the frustration that there is no easy fix, but I can help them, love them, support them, and pray for a miracle! If you choose to donate, any amount will be greatly appreciated that will help them in the battle to fight for Jaxon's well being.
(Picture in Mommy & Daddy's arms)
With Sincere & Deepest Thanks,
Grateful Grandma Jan
Organiser and beneficiary
Janice Listecki
Organiser
Naperville, IL
Briana Diorka
Beneficiary
