- K
Jax’s story
Hi, my name is Nick, I work offshore as a contract lead operator for Arena. I’m a husband to the kindest woman on earth, my wife Gina, who was a loan associate for THE BANK up until recent events. We are blessed with two beautiful boys, Dylan our 3 year old, and of course our newest member, Jax. While in utero, our son Jaxon Earl Regan suffered from “Bi-lateral Grade 4 “hemorrhaging" on his brain (IVH) better known as intra-ventricular hemorrhage, and being unlucky enough to have the highest grade. He was born on April 20th 2016 @ 28 weeks and weighed in @ 2lbs 6oz, which fell off to 1lb 8oz a few days after birth. A few weeks after birth, he was later diagnosed with Para-ventricular Leukomalacia (PVL), which is a dead white tissue on the brain that isn’t recoverable, and is result of the IVH. According to his neurologist, PVL is usually an indication that cerebral palsey may follow. Unfortunately they can’t give a yes or no on diagnoses this early in age for palsey, simply because the symptoms are undetectable on an undeveloped infant, they can only tell us that he is in fact at high risk and only time will tell, scary, but praying he proves them wrong. Due to the lack of brain development, his ventricles were not strong enough to move cerebral fluids properly, and in addition, the brain bleed continued. They then installed a “Subgaleal Shunt” and reservoir (which drains the brain continuously into a little pouch under the scalp). After a few weeks of promising MRI’s and cranial scans, they removed the subgaleal shunt. After only 9 days without that shunt, his head swelled to much larger than normal sizes, putting excessive pressure on his brain and rendering him sick and motionless. Well, the swelling never stopped. So, they then performed an emergency spinal tap to relieve the pressure, and the next day installed a permanent “VP Shunt” which is the same concept as the previous shunt, just larger, relocated to the back of the skull, and tubed from the brain, down through his torso, and coiled up next to his stomach, which involved cutting open his belly as well. All necessary torture considered (and many painful details omitted) there is finally some progress, far far from being out of the woods, but the facts are, he’s cheated death. And after 105 days in the NICU @ W&C’s, he’s finally home! Which is where a whole new journey began.
Due to the extent of his brain damage, his sight is poor from damaged nerves that connect the retina to the back of the his eyes, his vision didn’t get worse but has yet to improve. His motor skills are improving with therapy, but still til this day cannot take a bottle normally nor can his stomach handle any of the dozen formulas and remedies we’ve tried after the breast milk supply ran out. Few weeks of occupational therapy in the hospital taught him to eat from a bottle, but he’s still not good at it, eating less and less every day, and requires cheek support and a tad of force feeding to keep the doctor happy with his food and calorie intake. But seems in addition to reflux and colic, he now resents the bottle even when he’s hungry. We have to give him glycerin enemas daily because he’s terribly constipated and in pain. His pediatrician has just about exhausted every option to improve feedings, next is seeing a G.I. doctor. If it doesn’t get better soon, they’re going to want to surgically implant a feed tube directly in his belly and that’s definitely a step backwards for him, and us. Because of everything that’s happened this year, my wife had to quit her job to run jax around for his appointments which are almost daily, sometimes multiple times a day, Occupational and physical therapy, pediatrician, eye doctor, neurologist ect.. And as a result of my wife having to quit, our income obviously has diminished. Not long before jax was born, my pay was cut by 8% due to low oil prices as well, so things were already tight but manageable at the time. Now it’s getting scary for us. I have “ok” health insurance for me and my family, but even my 20% of what bills were about to come would have bankrupt us. After denying us for several weeks after Jaxon’s birth, simply because “we both had a job”, Medicaid denied him, but through hell and high water and the help of the hospital agents, Medicaid finally stepped up and accepted Jax due to his diagnoses, and covered our 20% of the total for the hospital "stay". (which was roughly around $700 k of the grand total of well over $3 million) Talk about relief. Only problem is, Medicaid for Jax ends April 20th 2017. We were told that by Medicaid, coverage only good for a year. His condition won’t just go away, nor will his future medical bills. Why would they take it away after one year? He is a special needs baby. Some of his conditions are for life! And could impair him for life, if not properly cared for! My wife and I are young, but combined have almost 30 years of making an honest living and paying taxes and then some. Why is it that we make a living to aid others with our tax dollars, but when the contributors’ themselves are in need, we don’t qualify for squat? The children are the ones who suffer in such cases, and we aren’t the only parents needing help and answers. It was a fight just to get Medicaid to help with the hospital stay. Why is it that my son doesn’t qualify for Social Security? He qualified for 2 months then was cut off. Oh yeh I forgot, house hold income…. So I earn a half decent living and support my family, drive a decent truck, maintain a home and a little property. All things my wife and I’ve achieved through years of hard work, love and dedication, and now raising two beautiful boys in it, and what are my options? Sale the house? File bankruptcy? Because my house hold income alone isn’t cutting it, regardless of how it looks on paper to the “state” or “government”, whom are more than happy taking all of our hard earned money, yet refuse to give back to those in need who spend their entire lives actually working to fund them, while we survive on the crumbs of our earnings. Ironic. Slowly but surely that savings we built over the years is drying up, and I’m running out of belongings to sale. We cut off our internet, cut back our television service to bare minimums, got rid of many things that weren’t necessity, and it’s still not enough. After our bills are paid, we are left with barely $400, heck that doesn’t even cover Jax’s doctor visit co-pays for one month much less food and supplies for a house of 4.
We didn’t choose this, Jax didn’t choose this, why should he have to suffer because the system is corrupt, he’s suffered enough already, I just want to see him continue to get the best care possible, and give him the best chance to grow up and live a halfway normal life. I was raised to earn my keep and take care of me and mine, and regardless of the outcome that boy will be loved, and we will still be proud. I’m in rare form speaking out about all this, I’ve never asked for, or accepted handouts or money and quite frankly the thought of it makes me nauseous; I’ve always been a giver. For the first time in my life, I’m desperate and terrified, I’ve never been rendered incapable of taking care of my family medically or financially, it’s falling apart. Emotionally, we’ve been shattered since April 20th. Psychologically, we can’t handle much more. If not aid for our son, then guidance, who can we talk to? Are there programs we aren’t aware of? In the least, prayer. Thank you for listening, and any help or response would be greatly appreciated. And God bless everyone who has supported us thus far.
Somewhat In Chronological order, attached are a few pictures, one our oldest boy Dylan, and a few pictures of the toughest person I know, our little champ, and my new hero, Jaxon Earl.
Hi, my name is Nick, I work offshore as a contract lead operator for Arena. I’m a husband to the kindest woman on earth, my wife Gina, who was a loan associate for THE BANK up until recent events. We are blessed with two beautiful boys, Dylan our 3 year old, and of course our newest member, Jax. While in utero, our son Jaxon Earl Regan suffered from “Bi-lateral Grade 4 “hemorrhaging" on his brain (IVH) better known as intra-ventricular hemorrhage, and being unlucky enough to have the highest grade. He was born on April 20th 2016 @ 28 weeks and weighed in @ 2lbs 6oz, which fell off to 1lb 8oz a few days after birth. A few weeks after birth, he was later diagnosed with Para-ventricular Leukomalacia (PVL), which is a dead white tissue on the brain that isn’t recoverable, and is result of the IVH. According to his neurologist, PVL is usually an indication that cerebral palsey may follow. Unfortunately they can’t give a yes or no on diagnoses this early in age for palsey, simply because the symptoms are undetectable on an undeveloped infant, they can only tell us that he is in fact at high risk and only time will tell, scary, but praying he proves them wrong. Due to the lack of brain development, his ventricles were not strong enough to move cerebral fluids properly, and in addition, the brain bleed continued. They then installed a “Subgaleal Shunt” and reservoir (which drains the brain continuously into a little pouch under the scalp). After a few weeks of promising MRI’s and cranial scans, they removed the subgaleal shunt. After only 9 days without that shunt, his head swelled to much larger than normal sizes, putting excessive pressure on his brain and rendering him sick and motionless. Well, the swelling never stopped. So, they then performed an emergency spinal tap to relieve the pressure, and the next day installed a permanent “VP Shunt” which is the same concept as the previous shunt, just larger, relocated to the back of the skull, and tubed from the brain, down through his torso, and coiled up next to his stomach, which involved cutting open his belly as well. All necessary torture considered (and many painful details omitted) there is finally some progress, far far from being out of the woods, but the facts are, he’s cheated death. And after 105 days in the NICU @ W&C’s, he’s finally home! Which is where a whole new journey began.
Due to the extent of his brain damage, his sight is poor from damaged nerves that connect the retina to the back of the his eyes, his vision didn’t get worse but has yet to improve. His motor skills are improving with therapy, but still til this day cannot take a bottle normally nor can his stomach handle any of the dozen formulas and remedies we’ve tried after the breast milk supply ran out. Few weeks of occupational therapy in the hospital taught him to eat from a bottle, but he’s still not good at it, eating less and less every day, and requires cheek support and a tad of force feeding to keep the doctor happy with his food and calorie intake. But seems in addition to reflux and colic, he now resents the bottle even when he’s hungry. We have to give him glycerin enemas daily because he’s terribly constipated and in pain. His pediatrician has just about exhausted every option to improve feedings, next is seeing a G.I. doctor. If it doesn’t get better soon, they’re going to want to surgically implant a feed tube directly in his belly and that’s definitely a step backwards for him, and us. Because of everything that’s happened this year, my wife had to quit her job to run jax around for his appointments which are almost daily, sometimes multiple times a day, Occupational and physical therapy, pediatrician, eye doctor, neurologist ect.. And as a result of my wife having to quit, our income obviously has diminished. Not long before jax was born, my pay was cut by 8% due to low oil prices as well, so things were already tight but manageable at the time. Now it’s getting scary for us. I have “ok” health insurance for me and my family, but even my 20% of what bills were about to come would have bankrupt us. After denying us for several weeks after Jaxon’s birth, simply because “we both had a job”, Medicaid denied him, but through hell and high water and the help of the hospital agents, Medicaid finally stepped up and accepted Jax due to his diagnoses, and covered our 20% of the total for the hospital "stay". (which was roughly around $700 k of the grand total of well over $3 million) Talk about relief. Only problem is, Medicaid for Jax ends April 20th 2017. We were told that by Medicaid, coverage only good for a year. His condition won’t just go away, nor will his future medical bills. Why would they take it away after one year? He is a special needs baby. Some of his conditions are for life! And could impair him for life, if not properly cared for! My wife and I are young, but combined have almost 30 years of making an honest living and paying taxes and then some. Why is it that we make a living to aid others with our tax dollars, but when the contributors’ themselves are in need, we don’t qualify for squat? The children are the ones who suffer in such cases, and we aren’t the only parents needing help and answers. It was a fight just to get Medicaid to help with the hospital stay. Why is it that my son doesn’t qualify for Social Security? He qualified for 2 months then was cut off. Oh yeh I forgot, house hold income…. So I earn a half decent living and support my family, drive a decent truck, maintain a home and a little property. All things my wife and I’ve achieved through years of hard work, love and dedication, and now raising two beautiful boys in it, and what are my options? Sale the house? File bankruptcy? Because my house hold income alone isn’t cutting it, regardless of how it looks on paper to the “state” or “government”, whom are more than happy taking all of our hard earned money, yet refuse to give back to those in need who spend their entire lives actually working to fund them, while we survive on the crumbs of our earnings. Ironic. Slowly but surely that savings we built over the years is drying up, and I’m running out of belongings to sale. We cut off our internet, cut back our television service to bare minimums, got rid of many things that weren’t necessity, and it’s still not enough. After our bills are paid, we are left with barely $400, heck that doesn’t even cover Jax’s doctor visit co-pays for one month much less food and supplies for a house of 4.
We didn’t choose this, Jax didn’t choose this, why should he have to suffer because the system is corrupt, he’s suffered enough already, I just want to see him continue to get the best care possible, and give him the best chance to grow up and live a halfway normal life. I was raised to earn my keep and take care of me and mine, and regardless of the outcome that boy will be loved, and we will still be proud. I’m in rare form speaking out about all this, I’ve never asked for, or accepted handouts or money and quite frankly the thought of it makes me nauseous; I’ve always been a giver. For the first time in my life, I’m desperate and terrified, I’ve never been rendered incapable of taking care of my family medically or financially, it’s falling apart. Emotionally, we’ve been shattered since April 20th. Psychologically, we can’t handle much more. If not aid for our son, then guidance, who can we talk to? Are there programs we aren’t aware of? In the least, prayer. Thank you for listening, and any help or response would be greatly appreciated. And God bless everyone who has supported us thus far.
Somewhat In Chronological order, attached are a few pictures, one our oldest boy Dylan, and a few pictures of the toughest person I know, our little champ, and my new hero, Jaxon Earl.