~My daughter Nikki April 28, 1973 - Dec 10, 2003~

Nikki's Annie doll & tattered quilt

This is about my precious youngest daughter Nikki. She was born a beautiful healthy child on April 28, 1973. 3 days before her 3rd birthday something went wrong and she started to seizure. We immediately rushed her to the ER where she was admitted to the hospital. Next day she was rushed by ambulance with a nurse, her pediatrician and me by her side to Children's hospital miles away. A ride I will never forget... A team of Doctors awaited our arrival. Some Doctors asked me questions others talk to the pediatrician and yet others attended to Nikki. She was put into ICU there she slipped into a coma having one grand mal seizure after another. For almost 6 weeks she was close to death as she continued to seizure. Test after test were done to try and find out what caused the seizures, nothing could be found. They tried many medications to stop the seizures and to bring her out of the coma. They even brought in a team of anesthesiologists to put her under in hopes of stopping the seizures. Doctor after doctor came to her care. When she finally did emerged from her coma she was severally brain damaged and no longer the happy Nikki we once knew.. her sweet smile was gone. My (then) husband and my happy little world was shattered. Our lives would never be the same. One of the ICU nurses told us when Nikki was in her coma she would be better off dead. I was shocked, furious at her cruelness and I told her so....but now as I look back I know why she said that. She knew the pain and suffering our Nikki would go through for the rest of her life. Nikki spent many days in many hospitals on many medications. I gave her injections and a special diet. We spent 2 weeks at the Cleveland Clinic preparing for a special MCT diet. Doctors tried new experimental drugs not yet released to the public on Nikki. She received hundreds of painful IVs. We rushed her many times to the ER at Children's Hospital 35 miles away. Eventually to try to keep Nikki out of the hospital I begged her Doctors to please let the IVs she needed to be administrated at home. They said it was not possible, it could not be done. With much persistence I called our local visiting Nurses to ask if they could help. They talked with the Pediatrician and Pediatric neurologist, they then agree to set up her IVs in my home. At home I then monitored her IVs and care when she needed to be hydrated. This allowed me not only to keep Nikki at home but to also be with my two other daughters who needed me...On Dec 10, 2003 the darkest day of our lives came. When Nikki was at school she had a sudden cardiac arrested, she died before they could get her to the hospital for help. The doctors had said that one day Nikki's heart would just give out. I NEVER gave it a thought or had I believed this could happen. So today on the 4th anniversary of Nikki's death I miss her more them ever. The tears are streaming down my cheeks as I think about Nikki's life and all she went through. I know she's in a much better place but I'm selfish and want her here with me. My life has not or will it ever be the same. The depression and sadness are unbearable right now. Please say a prayer for Nikki. Enjoy every day you have with your loved ones, do not take for granted they will outlive you. God bless you ~Mary~