Shorty after I left my abusive ex of almost 3 years I met Rick. He was very respectful of the fact that I was 5 months pregnant at the time and I had an 18 month old son. Time passed and I moved in with him and things went well. In late March of 2006, running past my due date yet again I finally had that moment when my water broke and everything seemed wonderful. Rick drove me to the hospital 40 minutes away, where I gave a natural birth with only him and my midwife and her assistant in the room. It was quiet and just the way I wanted my birth experiance to be. My first son was born in a teaching hospital and I had a med class staring at my lady bits the whole time. NOT FUN!
At 5:30am on March 20th Riley came into the world at 8lbs 4oz. He was perfectly healthy at birth. We left the next morning and came home to a happy household. Three weeks after his birth he began vomiting everything he ate. I suspected a formula intolorance. (I cant breast feed, my ducts dont line up right) His pediatrician put him on a soy based formula. At 5 weeks old Riley turned yellow. Thats not a color you associate with a 5 week old. I called his Dr. and was told to bring him to the hospital 40 minutes away. Maine Medical Center. After checking in and a week of testing Riley was diagnosed with Bilary Atresia. After he fell asleep that afternoon I left his room to learn more about BA.
BA: In lamens terms, A lack of a gal bladder or bile ducts, in less extream forms the gal bladder and bile ducts are pressent but scarred. Riley had the worst form. He had a surgery the next week called a kasai where they connect the intestine to his liver. It prolongs the need for transplant.
After the kasai we went home. A family with issues. We didnt trust his medical team from the start. The head doctor insulted me day one. We continued to follow orders EXACTLY. Riley then became sick again. Yellow, vomiting, and fever. I rushed him in and low and behold he had an infection from a leak in his intestine from the surgery. Another couple of weeks pass. The hospital staff become bitchy and are concerned that Im not there with him all day and night. I reminded them that I have a job and another child to care for and that when Im not there someone else in my family is. Riley is not alone. My ex also starts coming around. Until this point he had no involvment with our 2nd son. He demands visit rights and is granted one hour a night, which he ony attended a few times. Riley came home skinny and still vomiting. I requested that we get a referal to see a specialist in liver disease and was denied.
Again Riley became sick. This time with esophical reflux. The hospital blamed me. He came home after a few days only to go back in because of the same symptoms to be diagnosed with kidney reflux. Again he came home, again I was blamed. Riley was not gaining weight. I requested that MCT oil be added to the nasty formula he had to drink to increase his fat intake. I was denied infront of my parents. My father made a protest and suspected the head doctor of malpractus. I threatened to call police and report the incident and press charges againt the doctor. He obviously didnt know what he was doing and refused to give me a referal. In the mean time I was fighting a custody battle with my ex. I had proof that he did drugs and was abusing his current girlfriend. The then GAL wanted to suspend his visits until he could get parenting classes. DHHS stepped in and I was now under investigation, Happy 4th of July.
Riley continued to not do well. He was only 12lbs. He did loose alot of weight after his surgery cause he was not allowed to eat for 3 days after. He went from 8lbs at birth to 6lbs after surgery and then fought to get the weight back. He was only allowed to eat 3oz of formlula every 3 hours. This formula was rancid. I would vomit at the smell so I could only imagine how he felt.
In September he became sick again. I knew in my heart it was a malabsorbsion problem. He didnt have enough bile salts to break down nutrients. I KNEW that was the problem. I told doctors that was it. I didnt need a medical degree to see what was wrong with him. The head doctor “ordered” a test. I was never allowed to see the results on paper but I was told I was wrong and that it was now evident that I neglected Riley. DHHS came in to speek with me. They lied to the doctors about meeting times. She, the social worker didnt do any investigating into his medical records or his disease. She just placed him, an hour and a half away.
To be continued: