My mother was told that she was going to have to have a c-section because I was going to be born full term, huge 9 lb. healthy baby boy. Instead, I was born premature, weighing 5lbs, suffered brain damage, and require care 24 hours a day 7 days a week.
To date, my true diagnosis has not been determined. However, the doctors have said that I have Hypoxic Ischemic Encephalopathy and Cerebral Palsy. I rely on a portable oxygen machine to breathe and cannot travel without it. I rely on a humidifer for my trach (which is a breathing tube that is placed in the neck), I have to be hooked up to a pump for feedings, require constant suctioning because I am unable to suck or swallow my saliva and secretions, and I also have a dislocated left hip.
I have been hospitalized from January 24 to April 27, 2007. On April 13th, I underwent my first surgery for a gastrostomy tube with nissenfundoplication (which is a feeding tube). I was discharged on April 27, 2007 and five days later had to be rushed back to the hospital because I turned blue. On May 2nd, I was readmitted for RSV, which could’ve been fatal for me. I became very ill during my stay in the hospital, and had to be intubated and on May 18th. I underwent my 2nd surgery for a tracheostomy tube. I was discharged from the hospital for the second time on June 11, 2007. I developed a brain injury at birth, Hydrocephalus (which is spinal fluid build up on the brain) and had to undergo another surgery to have a shunt placed in my brain. On August 7, 2007, I was admitted for observation because I had fluid in both of my ears and required surgery. On September 5th, my fourth surgery was performed (myringotomy) to have tubes placed in both ears. On November 2,2007 I was admitted for pneumonia and was discharged on November 5,2007. On January 14,2008 I was admitted for a fever of 106.1 and vomiting from my G-tube, trach, and nose. I was diagnose with Pancreatitis and pneumonia and had to undergo surgery to have a central line and reroute my G-tube to my small intestines. I was finally discharged on February 15, 2008. On March 24, 2008 I was admitted for a redo on my Gastrostomy tube and fundoplication and I was discharged on March 26,2008. On June 27,2008 I was admitted in to the hospital for upper respiratory problems in my right lungs and was given steroids and on July 1, 2008 was discharged. On August 25,2008 I was admitted into the hospital for Respiratory problems and was discharged on August 30,2008 and four days later I was readmitted on September 3, 2008 and discharged on September 10, 2008. On December 19,2008 I was admitted in to the hospital for Upper respiratory distress and I was discharged on December 23,2008.
I currently take 4 medications by G-tube. Klonopin which is for seizures, Robinul for secretions, Baclofen for muscle relaxer,Keppra for Seizures, Diastat for seizures that are greater than 5 minutes. I take three medications by nebulizer, Pulmicort, Atrovent and Albuterol, and one powder that is applied to my neck, Nystatin and one applied to my g-tube, Sucralfate.