Pablo Coelho said, “Life is short. There is no time to leave important words unsaid.” I will no longer procrastinate beginning this blog. Whether I am ready or not, I begin today.
My name is Patricia Alcala and I have an important story to share. There are many in this crazy world of ours who have been through, or are going through, the same agonizing steps. I, not unlike many of you, was thrilled after giving birth to my youngest child that we named Alex. Nothing could have been more perfect. He was a boy. That made our family complete: My husband, myself, my adorable son Max, our sweet daughter Crystal and now Alex. Before we were sent home I asked the doctor about his ‘sunken in’ chest. Yes, those were my words. I was told that it was nothing to worry about and my baby was in perfect health.
It was well into Alex’ first year of life and after a countless number of doctor and hospital visits for loud breathing, difficulty breathing, fatigue and inability to take in food, that I was given the proper name to his chest depression. It is called ‘pectus excavatum.’ The M.D. told me that it could be causing all of his symptoms but that he would just ‘grow out of it.’ Nothing changed. We continued on our unscheduled routine of driving frequently to an office or a hospital. I was completely unaware that this would remain my life for years to come.
I carried a burden of guilt with me. I knew that it wasn’t anything that I did to make him sick, but I was a Critical Care Nurse at the time. Starting as a Licensed Vocational Nurse at eighteen years old, then an RN and eventually a Physician Assistant. Why couldn’t I help him or at least explain to the practitioners in a way that they would understand. This was the beginning of my journey through a tangled web of misdiagnoses, mistreatment and sheer negligence. Please join me as I try to help make a difference for these children who are suffering through it all for all of their years.