The months went by and things continued as they were.  I watched as our family quickly transitioned from the typical Mom, Dad, two children and a brand new baby to a home with all of the same people beginning to learn how to adapt to this different  life with a chronically ill child.  it had touched us all.  Crystal and Max were with Manuel more often now while I was taking Alex to another appointment or spending time at the Emergency Room into the wee hours of the morning.  I began to feel the change that I was undergoing also.  From the time that I was a little girl, I was strong, independent, and intelligent, but now when the nurses and doctors were telling me that I shouldn’t have brought my baby in on one day, then why didn’t I bring him in earlier on the next day, i became confused and unsure of myself.

One afternoon I had been struggling with whether or not to bring him to the ER, not wanting to feel like the crazy, over protective mom.  We had just been the night before and were told that he was fine.  This day his wheezing remained, he was difficult to wake up, and just did not look right.  My husband came home and took one look at him and said we had to go to the hospital immediately.  He was taken to a room right away.  They began breathing treatments and eventually put an endotracheal tube down to help him breathe easier.  Alex was two years old and we were finally given a diagnosis.  He has asthma.  Oh.  Alright, I know about that.  My sister had that.  They sent us home with a liquid medicine called Quibron.  Now we have the answer.  Things would get easier from here, right?  Well, no they did not.

By now everyone had just the remedy for Alex’ ailment.  My mother thought Noni juice was the answer.  Some in my family thought they should cut some of his hair and bury into an old oak tree and he would be sure to grow out of it.  After all, that’s what they did when my sister Linda was diagnosed with asthma.  I would thank them all for their kind thoughts and unique ideas then continue to trust the medical world.

In a strange way our family was learning a new normal. There were still  as many trips to the hospital, but they were not so frenzied.  I wasn’t as frazzled.  We all seemed to be settling into a less chaotic way of life.  Deep breath in.  Deep breath out.  We kept putting one foot in front of the other, and continued to do what had to be done.


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.