The story of a real hero

[2000stanggirl]

Caution: Long, and potentially tear-jerking.....but has happy ending!

Some of you have expressed interest in hearing my son's story. I am more than happy to share, because my kiddos are the light of my life.

This is the abridged version of my son’s life story. Maybe it will allow you to see why my son is my hero. Brayden, my second son, was born 3 months premature weighing 2 lbs 6 oz and was 14 inches long. (For a size comparison, most fountain drinks are 36 or 44 ounce, Brayden was 22 oz. and a Barbie doll is 12 inches) He had to be resuscitated in the delivery room and was immediately put on a ventilator because his lungs were too immature to function. The first time I saw my tiny son was on a TV screen in my postpartum room 6 hours after he was born. There was a little red skinned baby hooked up to so many tubes and wires that you could barely see him. I was initially told he would not survive 24 hours. I held him for the first time when he was 2 ½ weeks old. He took his first solo breath at 3 weeks old. He had many ups and downs during his stay in the hospital some of which included part of his intestine dying, bleeding in his brain, infections in his blood stream, and 13 blood transfusions. He stayed in the NICU (neonatal intensive care unit) for 3 months, and weighed 5 lbs 4 oz and was 17 inches long with a heart monitor, oxygen, and 13 medications.

I thought the worst was behind me when I took him home. Little did I know it was just the beginning of a 4-year nightmare. He was re-admitted to PICU (pediatric intensive care) only two weeks after he came home due to cardiac arrest. This occurred over 80 times in his first year of life. He began having seizures at 7 months of age. He began wearing glasses at 10 months, and he was diagnosed with Spastic Quadriplegic Cerebral Palsy at 11 months old. By the time he reached his 1st birthday, his medical bills had reached 1.2 million dollars. He was unable to sit up, eat, or talk and weighed only 14 pounds. A feeding tube was surgically placed into his stomach because he was unable to eat orally. At a year and a half, his GI tract went into total failure so he was placed on TPN (total parenteral nutrition. This is IV nutrition that is delivered directly to the heart.) The TPN caused him to go into multi-organ failure. His kidneys, liver, pancreas, and heart were all failing. They refused to put him on transplant lists because they felt he would have died anyway, and “wasted” a donated organ. The doctors felt he was on borrowed time and we should just make him comfortable. We took him home to die. He wasn’t ready to give up though. He fought with every ounce his tiny body could muster. He kept getting very serious blood infections from the special IV line in his chest, making his ordeal only more complicated.

By his second birthday he weighed 22 lbs, had begun sitting with support and his medical bills had passed the 2 million mark. He remained on the IV nutrition until he was 2 ¾ years old. His guts finally started working again, and we were able to place a special feeding tube directly into his intestines. Eventually he was able to be weaned from that, on to a regular feeding tube in the stomach. Just as we were making that transition, he had a massive seizure that lasted 3 ½ hours. It left him comatose for two days. He did eventually recover fully and even learned to sit up by himself shortly after. He began eating orally at the age of 3.

From birth to current, he has undergone 25 surgeries and hospitalized 53 times, yet he is always smiling. He is nearly 5 years old now. He no longer uses his feeding tube, he talks in full sentences, and he can now walk short distances. While he still has congestive heart failure, the rest of his organs have healed and function properly. He is no longer on oxygen, and takes only two medications. He has been seizure free for 4 months. Although he is still small, he is growing at a steady rate. He is 33 lbs and 37 inches tall. He is very big in his mommy’s eyes. Words cannot express how proud I am of him, and all of his accomplishments.

Picture of Brayden at 3 years old.