Miles

Before Miles was born we knew that he had an enlarged kidney. We had no idea what we were in for. He was HUGE! 9 pounds, 11 ounces, 21 inches long, and bright red hair. He was cyanotic at birth and intubated right away. The phenomenal pediatrician that was on staff suspected pulmonary atresia right away and later that day she diagnosed him with Tetralogy of Fallot, as well. He went straight to Texas Children's Hospital. They tried to extubate him at 4 days old and his left lung collapsed, but not before we got to hold him for the first time. Miles didn't like the vent at all. He had a bronchoscopy at one week to remove a mucus plug from his left lung. Then he had the B-T shunt done at 2 weeks old. He was in the hospital that stay for 4 weeks.

We were home to 2 weeks and admitted again for one week for acid reflux and pyloric stenosis (a side effect of the PGE). He was also diagnosed with urinary reflux and an enlarged right kidney. We got home that time the week in July. He started to get really fussy. He cried all the time. I took him to our pediatrician, one I found through an online referral service. Our regular pediatrician wasn't taking new patients. He said on the first visit that, before we came, he looked up TOF up in the book to be sure he knew what it was, not a good sign. Anyway, he said Miles had colic and to take him home. That was on Tuesday July 26th. I called the cardiologist and finally got him on Thursday the 28th, the day I was to leave to go to my high school reunion. Miles' pulse ox had been in the 70's but this day it was 49-50. He gave us two options, stay and have a cath or stay and have a cath tomorrow. His shunt had narrowed, it lasted 10 weeks. We were first admitted to the regular heart floor, then moved to the CVICU a short time later, as his condition worsened. Miles had his complete repair Aug 6, 2004. We were home 4 weeks later.

Miles was doing very well and then one day in November he started to act very strangely. He would stare off, vomit and then go to sleep. I was on the phone with the on-call nurse all day at least 6 times. They kept assuring me that he was fine, probably just his reflux. We went out of town, just south about 20 miles to my in-laws house that night. He was in my lap and I looked down at him and he was blue and not breathing. His tongue was blue and sticking out, his lips were blue and his eyes were blue. I said Oh My God and my mother-in-law swooped him up from my arms and started to give him rescue breaths while I called 911. By the time they got there he was screaming and pink again. They took us to the closest hospital with a cardiologist. They released us because he was not in CHF, the only thing they did was a blood test and an EKG. We went home and I stared at him all night from about 4am to 8am. I took him straight to the pediatrician (we got a new one after the last incident) and he turned blue again in her office. That earned us a week in Texas Children's. They could never give a cause but said that maybe because he has an ASD still the blood shunted over and made him pass out. He has only had one other cyanotic episode since then, still with no explanation.

Miles turned 2 this year and is doing so well! We are so happy with all of our wonderful doctors and surgeons that have taken care of Miles! Dr. Frasier was his surgeon, Dr. Justino is his cardiologist, Dr. Tiwari is his pediatrician and there are many more and we love them all.

He will need more surgery in the future to replace his conduit and close his ASD but not for a long time.