My son, Paxton Eli Padilla, was born on February 2, 2010 with two very rare congenital defects known as Ebstein’s Anomaly and Pierre Robin Sequence. In addition, the doctors later discovered that he has severe developmental delays, gallstones, bilateral cryptorchidism, and gastroesophageal reflux. Since that time, he has required around-the-clock care, extensive diagnostic work ups, numerous surgical procedures, and multiple hospitalizations. He will require future surgeries and lifelong medical treatments, most of which will have to be performed at Children’s Hospital of Boston due to the unique conditions he suffers from. All of this has been devastating not only emotionally, but also financially.
The most life threatening of Paxton’s two diagnoses is the Ebstein’s Anomaly. Unfortunately, Paxton was born with the most severe form. This is a very rare congenital heart defect that results from the tricuspid valve not developing correctly. The leaflets of Paxton’s tricuspid valve never separated away from the walls of his right ventricle during development, causing it to be unable to close at all. This allowed blood to flow backwards into the right atrium rather than forward out of the pulmonary artery. In turn, the right ventricle was smaller than normal and couldn’t pump enough blood to the lungs adequately. This caused his body to not receive enough oxygenated blood. In addition, Paxton was born with an atrial septal defect, which is a hole between the upper right and left chambers of his heart. In normal babies, this hole closes shortly after birth. In Paxton’s heart, it was unable to close because of the abnormal pressure that built up as a result of the backward blood flow into his right atrium.
The second of Paxton’s conditions is called Pierre Robin Sequence. It is a congenital condition caused by a chain of developmental malformations. Early in development, the lower jaw did not grow sufficiently. This caused the tongue to be pushed back and forced to the roof of the mouth. As a result, this prevented closure of the palate, which caused a cleft. Paxton has suffered from a variety of complications that are secondary to this diagnosis, which include breathing difficulties, persistent middle ear fluid, speech defect/delays, feeding difficulties, and an increased chance of aspiration. He continues to be closely monitored for these problems.
Unfortunately, with the combination of medical issues that Paxton suffers from, there is a high suspicion for an underlying genetic syndrome. It has yet to be identified because all of the genetic testing that has been done has come back within normal limits. Despite unremarkable test results, it is evident that Paxton has severe developmental delays. Since birth, he has struggled to achieve many milestones. He just turned two years old, but he is currently functioning at a 4 to 6 month old level. He does not eat anything by mouth so his only source of nutrition at this point is through his gastrostomy tube, which is a feeding tube that was surgically placed through the abdominal wall into the stomach. He is connected to an enteral feeding every three hours over an hour all day long and a continuous feeding overnight. He also receives numerous medications as well. Paxton has a couple of different pieces of adaptive equipment, which include a Bantam Stander and a Rifton Activity Chair, that he has to use one to two times daily for therapy exercises and feeding sessions. This is critical for progress in his developmental skills, bone development, muscle development, and safety. He also has a Manatee Bath Chair that is critical for being able to safely bathe him. He was recently transitioned from a regular stroller to a pediatric wheelchair to help transport him around more easily and securely. All of this along with his severe developmental delays prevents him from being able to be under the care of anyone other than myself or a skilled nurse.
He has received therapy services through the county since early on to try to give him the best opportunity for improvement. For the first year and a half of his life, these were the only therapy services he received. On average, he would get two hours of occupational therapy per week. It was not until he had his second major heart procedure and his cleft palate repaired, that the doctors and therapist even considered increasing his therapy services. Once his oxygen saturation levels stabilized and he had more stamina, Paxton was able to be pushed harder and to be asked to work longer, but the county could not increase the hours of therapy he was currently receiving. Paxton's progress slowed down tremendously over time and it became obvious that he required more therapy services. The medical team of doctors, therapists, and I strongly felt that without it, he would continue to plateau and not improve. In April 2011, the neurodevelopmental psychologist at Children’s Hospital Boston strongly emphasized the importance of an intensive therapy program for Paxton of about 10 – 12 hours of services per week. She felt that this would give him the best chance for improvement in reference to his developmental delays.
After being on extensive wait lists for the outpatient therapy services, I was finally able to successfully get Paxton the adequate therapy services he needed by August 2011. Paxton was seeing a physical therapist three times a week, an occupational therapist three times a week, and working on feeding therapy three times a week. Two of these sessions were still through the county, which is a parent based program in which I am doing most of the exercises and skills throughout the session using the resources that I have available to me at my home. Within less than two months, the progress that Paxton had shown since starting this rigorous schedule was mind blowing not only for me as a parent, but also to Paxton’s team of medical doctors, physical therapists, occupational therapists, and speech therapists. I was disheartened and devastated when I was informed that starting January 2012, he would be forced into managed care under a different health care provider. It came as quite a surprise that they denied coverage for the majority of these therapy services. Unfortunately, I do not have a hand in this decision making process. Just like with most everything that goes along with Paxton's care, everything is a battle. This has not been the only issue that has occurred since Paxton was switched to a different insurance. I have had recent issues with getting some of his prescriptions covered that he has been on since he was born and even a vaccine that could prevent a life threatening situation for him. Also, it has been a struggle to get the out of state appointments covered, even though I have no choice in where he goes for evaluation and treatment at times. All in all, I fight the good fight everyday for my son. I only want what is in the best interest of Paxton.
Paxton currently has close to thirty medical doctors and numerous therapists. He will need continued extensive care throughout his life, but if we continue to push him, especially at this age when his brain is the most malleable, we will give him the best chance for change and success. He is a fighter as am I. I will do anything for him to have the best quality of life possible and get the most appropriate treatment and care. There is no perfect solution when one is struggling financially and your child requires medical care that is outside of your financial means. I would give anything to not be in this situation, but I cannot change that. It pains me to see Paxton have to struggle so much everyday of his life. He does not understand what is going on and he does not deserve to go through something so awful. It is very difficult not to feel sorry for myself or feel completely alone in this situation, especially since my husband left us this past June. I am truly alone in this fight for Paxton’s life. It is easy to become overwhelmed and to have a hard time understanding why this happened to us. It is easier to give up. It is easier to give in. It is easier to walk away and quit, but I can't. I had to find an inner strength that I never knew existed and move forward. Even though my patience and faith has continuously been challenged along the way, I realize that I have been chosen to be the source of love and strength for this little miracle and I’m not giving up now. I realize that it is not just about me, but something much larger. In the end, this incredible gift of life has taught me something about myself that I never knew was there. Paxton has made me a better version of myself and he gives me a reason to continue to push through even when I think I cannot. All of these unexpected changes in our lives have been extremely difficult on me in many ways, but it is all worth it at the end of the day when he looks up at me with his piercing eyes and smiles.
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