Jax Rackley
Donation protected
Meet my son, Jax Rackley. Jax is 6 years old and was born with an extremely complicated health condition that causes 60% compression to his trachea (windpipe). This compression is believed to be caused by his aortic arch being floppy. This diagnosis was made by OHSU when Jax was 4 years old. OHSU then put Jax on their research panel and recommended an aortopexy, which is a heart surgery to permanently attach the aortic arch to his chest wall. However, there is a chance this surgery won’t work for my son because there could be too much damage to his trachea because the condition has gone on for so many years. This condition is diagnosed at infancy with the average age being 3 months. This tracheal compression not only poses a threat to his airway, but also causes Jax to have a very deep and croupy bark cough, which he has had since birth. I have been advocating and fighting for Jax since he was born. Complaining to multiple specialists and multiple pediatricians with all of them telling me to not worry about his benign condition. Jax also suffers from asthma which is a completely different issue then the tracheal compression, however, these two issues feed off of one another, causing his symptoms to be quite severe at times. I was told that this compression would not likely compress to 100%, causing Jax’s airway to completely collapse. Well, this occurred in October and we found ourselves in a very scary situation.
We followed up with his primary care physician who advised us to get a second opinion with either Stanford Children’s Hospital or Boston Children’s Hospital in Massachusetts where the best pediatric specialists’ practice. We chose Stanford, as my husband resides 6 months out of the year in California and I felt we had a better chance at purchasing an insurance policy.
He was referred to the Chief Pediatric Cardiothoracic surgeon at Stanford Children’s Hospital. This surgeon again, put Jax on their research panel and determined Jax’s condition to be extremely complex. Stanford Children’s Hospital send all of their complicated cases to a surgeon who runs an aerodigestive clinic at Stanford and specializes in tracheal compression disorders. This surgeon is recommending Jax to have multiple complex studies and procedures to give Jax a diagnosis and a prognosis. These tests will give us answers to if this aortopexy will even benefit our son. Stanford is adamant my son needs these tests. One of the tests being done is a triple endoscopy where 3 different specialists scope him at the same time. They will also do a lung biopsy and lavage of his lungs as well. Just the triple endoscopy is $59,000.00. Stanford’s policy is to collect 60% up front if you are private pay or you have an out-of-network insurance policy. The only way to get in in-network policy is to reside in Stanford’s zip code, to which I will do if my son ends up needing this major surgery that Stanford quoted me $500,000.00.
After many failed attempts at purchasing Jax an insurance policy I finally appealed the last denial I got. Thankfully, we won the appeal and were able to purchase Jax an insurance policy through Blue Shield of California. However, it is an out-of-network policy and provides only 50% coverage, but this is the very best that I could do. Stanford advised me my 60% is $36,000.00 and they needed to collect this from me at his appointment on March 5th. They advised me of this 10 days prior to our scheduled appointments and procedures. Had I known this 3 months ago I would have had the time to refinance our house or sell a vehicle or tap into our resources. However, I do not have the time to gather money from our assets, as we have an appointment next week.
I have exhausted all efforts at finding any patient advocacy or resources available to us through Stanford, with the main surgeon even bringing Jax's case to the CFO with no exceptions. Apparently, you cannot apply for financial assistance until you receive a bill.
The main surgeon from Stanford called me yesterday and expressed the significance of these studies in determining Jax’s diagnosis and prognosis and well-being. He asked us not to cancel or reschedule. He emphasized the importance of these tests in determining whether Jax needs the heart surgery OHSU is recommending. He stated these tests are the very best research there is in diagnosing a pediatric patient with a chronic cough. He was apologetic regarding the financial policies of Stanford, and unfortunately the finances are out of his hands.
I have asked Stanford to accept $10,000.00 instead of $36, 000.00 and I am waiting for an approval for this. In the interim I am asking for any donations to assist us in getting these imperative tests done, so we can finally have answers as to what surgeries can improve our son’s health. I am so grateful to each and everyone of you who are so gracious enough to offer your support and I thank you from the bottom of my heart.
We followed up with his primary care physician who advised us to get a second opinion with either Stanford Children’s Hospital or Boston Children’s Hospital in Massachusetts where the best pediatric specialists’ practice. We chose Stanford, as my husband resides 6 months out of the year in California and I felt we had a better chance at purchasing an insurance policy.
He was referred to the Chief Pediatric Cardiothoracic surgeon at Stanford Children’s Hospital. This surgeon again, put Jax on their research panel and determined Jax’s condition to be extremely complex. Stanford Children’s Hospital send all of their complicated cases to a surgeon who runs an aerodigestive clinic at Stanford and specializes in tracheal compression disorders. This surgeon is recommending Jax to have multiple complex studies and procedures to give Jax a diagnosis and a prognosis. These tests will give us answers to if this aortopexy will even benefit our son. Stanford is adamant my son needs these tests. One of the tests being done is a triple endoscopy where 3 different specialists scope him at the same time. They will also do a lung biopsy and lavage of his lungs as well. Just the triple endoscopy is $59,000.00. Stanford’s policy is to collect 60% up front if you are private pay or you have an out-of-network insurance policy. The only way to get in in-network policy is to reside in Stanford’s zip code, to which I will do if my son ends up needing this major surgery that Stanford quoted me $500,000.00.
After many failed attempts at purchasing Jax an insurance policy I finally appealed the last denial I got. Thankfully, we won the appeal and were able to purchase Jax an insurance policy through Blue Shield of California. However, it is an out-of-network policy and provides only 50% coverage, but this is the very best that I could do. Stanford advised me my 60% is $36,000.00 and they needed to collect this from me at his appointment on March 5th. They advised me of this 10 days prior to our scheduled appointments and procedures. Had I known this 3 months ago I would have had the time to refinance our house or sell a vehicle or tap into our resources. However, I do not have the time to gather money from our assets, as we have an appointment next week.
I have exhausted all efforts at finding any patient advocacy or resources available to us through Stanford, with the main surgeon even bringing Jax's case to the CFO with no exceptions. Apparently, you cannot apply for financial assistance until you receive a bill.
The main surgeon from Stanford called me yesterday and expressed the significance of these studies in determining Jax’s diagnosis and prognosis and well-being. He asked us not to cancel or reschedule. He emphasized the importance of these tests in determining whether Jax needs the heart surgery OHSU is recommending. He stated these tests are the very best research there is in diagnosing a pediatric patient with a chronic cough. He was apologetic regarding the financial policies of Stanford, and unfortunately the finances are out of his hands.
I have asked Stanford to accept $10,000.00 instead of $36, 000.00 and I am waiting for an approval for this. In the interim I am asking for any donations to assist us in getting these imperative tests done, so we can finally have answers as to what surgeries can improve our son’s health. I am so grateful to each and everyone of you who are so gracious enough to offer your support and I thank you from the bottom of my heart.
Organizer
Rosie Rackley
Organizer
Medford, OR