I write, not only to try and free my brain of the constant loop of thoughts, but in hopes to use this as a tool. After voicing my struggles I've found sadly many others having the same problems. With the help of my friends story I sat down and wrote "our story". This is in alil title more detail, but the jist of it I spoke out to the medical staff during rounds this morning. It was time for it to be said, before I blew my top. My hope is that they heard me. This is a teaching hospital and I plan to teach them to be humble. Maybe my calling is to be an ambassador to teach the newbies to find compassion and to have a vested interested in a world of chronically ill children. I hope you like it -
To the Medical Staff
Two days before Christmas 2003 I was induced into labor excited to bring my baby boy into the world. Three and a half weeks later, he left the NICU on hospice due to severe brain damage that he sustained during delivery due to a physicians neglect. So trust is not a given by me, it's earned. I brought home my son to die, cherishing every moment I could get as I was told it would take a miracle for him to make it to his first birthday. As a result of the trauma he sustained at birth it has left him severely disabled physically and mentally Because of his brain damage, my son cannot walk, talk, or breathe on his own - dependent of a ventilator 24/7.
Despite his diagnosis' my son IS a human being with a beautiful personality and he can feel. He is aware of his surroundings which depending on the circumstances, can make him scared or feel enjoyment. His eyes speak volumes of how he feels. He has a smile that WILL light up the room. He speaks his own language you just have to see, hear, and read him. Please look up from your computers and books as he is a unique wealth of knowledge, just listen, not only to him, but to me as his mother and CEO of the Team. I employ you to be apart of his team so please respect us.
As the parent of a child with chronic and complex medical needs, it's important that I be involved in all and any decision making with is care. If my son requires a hospital stay, please don't treat me as though I don't know how to care for him. Remember that I am part of the team and my vote counts in any and all decisions to be made. I can help by knowing his cues, inform you of his normals, and educate you on what's been done in the past, I live this life style everyday. Your 2 minute assessment of him in the morning doesn't give you the complete picture of how he is doing or what he may need.
Through the years I have learn how to care for him and I'm doing to best that I know how. I am capable of changing out a tracheotomy tube, accessing a med port, and changing out a g tube feeding button. I know how and when to suction my son, give medications, use oxygen, and work with the ventilator. I can bag my son during respiratory distress or failure and I can preform CPR to continue his life. I have worked with home IV medications and nutritional needs. I was told he was going to die before his first birthday and he's going to be a teenager this year....I think I've done a pretty good job thus far.
Don't take it personal if I talk with his another physician on his team and we choose a different course than the one you recommended. I understand illnesses need to be addressed and treated but you may not see the importance of the big picture with ALL of his current medical conditions so treatment may need to be altered. Sometimes all I need for you to do is listen as I vent my frustrations and fears. I don't need you to have all the answers, I just need you to care and help me figure out the issues and treatments at hand. Make yourself available and know I will not bother you unless I really need your help. I'm very good at managing illnesses and treatments that most find overwhelming. I've learned more medical terms, diagnosis', and treatments then I cared to know, but I embrace every new challenge if that means having a quality of life for my son with our family.
Over the last twelve years, I've had the opportunity to spend a great deal of time in the presence of physicians. I've encountered the good, the bad, and the indifferent. You are human, not GOD. I have an exceptional team of physicians who provide the best care to my son, but One reservation I will always have is the good will intentions from new physicians as from my perspective a "doctors decisions" put us in this position in the first place. I know his team now is full of very special physicians who have done what they can to ensure that my son and family have the best quality of life under his circumstances. They have not only cared for my son, but they have also cared for me and my family as a whole. They have supported me, educated me, and guided me throughout this journey my son and family are on. And for that, I will be forever grateful.
Be that kind of physician, be a physician who cares.
"You treat a disease, you win, you lose. You treat a person, I guarantee you, you'll win, no matter what the outcome" - Patch Adams
You can follow our journey on our blog - oserofamily.blogspot.com
To see more stories go to Touchstones of Compassionate Care page. www.touchstonesofcc.blogspot
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