About Tee-Lee

Read my story. I am writing this to seek advice and funds to help find a lawyer and a medical expert.

   visit caringbridge.org and ENTER: larryjr             

 The Suffering of
Larry W. Avent Jr
Medical Neglect/Late Diagnosis

Larry Avent Jr was born September 19, 2003. About 5 months before he was born the OBGYN doctor told us that something didn’t look right on the Ultrasound. He said that the fetus (baby’s’) bladder looked larger than it should be. He referred us to UNC Chapel Hill Hospital. I, Mother started to see the OBGYN Doctor there and had ultrasounds done about every two weeks. The UNC doctors told us that our baby would be born with Posterior Urethral Valves and his kidneys would be damaged. They also said that he would need to do dialysis and have a kidney transplant.
Larry Jr. stayed in the hospitals’ NICU for about a month ½, after he was born. He was fed by a tube; he had a lot of IV’s, and on the Oscillator machine. He had to have surgery (Ureterostomy) at 4 days old, due to the blocked urethras because he couldn’t release his urine. While he was in the NICU on the Oscillator machine, his head was laid on one side for a while and he had a sore on the right side of his head. We noticed it and told the Nurse and she informed the doctor. They ordered a cream to put on it. The sore went away but it left a bald spot on his head.
When Larry Jr was discharged from the hospital, he wasn’t on dialysis but the PD tube was placed, in case of an emergency to start dialysis. After two weeks of being at home, Larry had to go back because he was ill with an infection. His blood labs were off (potassium was high; kidney function was not too good). They started Peritoneal Dialysis on him around November 22, 2003. I, Mother had to learn to administer the dialysis, in order to take him home.
He went home around December 11, 2003. He did ok on the dialysis except for a couple of infections that were treated and he was released. Larry Jr was put on the Transplant list around August 2005.
The UNC Hospital called us with a cadaver kidney donor on March 27, 2006, to come and be evaluated for the kidney match. He was a match and received the kidney March 28, 2006. He did well with the transplant. He didn’t walk right after surgery. It took him a while to get his strength back in his legs but he still had a hop for a while. They had trouble getting him to take the medications. After awhile he started to take them better.
Larry Jr went home and did well except for taking his medication properly. He had labs drawn about three times a week and saw the UNC doctors regularly. He never missed an appointment. He started to become sickly around the first week of August. He complained of stomach pain, mouth pain and would vomit every so often. We took him to the emergency room, Halifax Regional for these symptoms but nothing they claimed showed. The local hospital called UNC every time we took him to the local hospital. They went by UNC Hospital orders. After a while, they noticed that his blood count/hemoglobin was LOW. They started treating him for anemia; giving him iron transfusions and also started the Pediatrician giving him an injection of Arenesp every two weeks. At his appointments, we kept telling them that something was wrong with him. We asked them were they missing something. They told us that the symptoms were normal.  At his last appointment before diagnosis, I called the Hospital begging them to check Larry Jr from head to toe. I, Mother told them that something was wrong with my baby.  He only received one due to the fact that his last appointment with his Pediatrician, he had a fever of 104. The pediatrician called the UNC doctors and informed them about the fever and the low blood count. They    had received the results back by then and told me they wanted him there at the Hospital right away. When we got there they told us that they got worried when I called and told them at his appointment that he needed to be checked from head to toe, so they gave him a special blood test. They said that he had EBV, which could turn into and act as a Lymphoma, because of taking the Anti-rejection drugs. We didn’t know it was serious but they told us that it was worrisome to them.
He had to do several test such as (bone marrow test, liver biopsy, MRI and so on). It took about two weeks to make a decision about what to give Larry Jr. He had to start Chemotherapy. They told us that he had Post transplant Lymphoproliperative Disorder caused by taking Prograf/anti-rejection drugs. He had lesions on his liver, spleen, lungs and lymph system. In this case he was Stage 3-4 and they were just diagnosing this because they were looking in the wrong direction. The Pediatric Nephrologist /kidney doctors told us that the Pediatric Onocologist would be taking care of him most of the time. He had to take Chemotherapy and they also had to reduce his medication (prograf). They told us about the Protocol, that they go by and asked us if we wanted to participate in the research. We told them if our son would have to go through any more pain, we didn’t want to, but if it was the same as going through the regular treatment, it was OK. They also told us that they didn’t think it was life threatening. They said that children usually do well with that Protocol. We accepted and signed the research paper. Dr. Blatt seemed like she cared more for the research than our sons’ treatment. We didn’t see her often. We saw Dr. Gold, Dr. Western, and the residents more. Well Larry Jr sat on the childrens' 5th floor at UNC for two weeks running fevers and vomiting. He got to the point he could hardly breathe before they moved him to the PICU.
*Larry Jrs' spleen had enlarged and was pressing on his lungs and Dr. Gold told us not to worry. They acted as if they had every thing under control. We had no idea our babyboy was dieing. He ended up losing his transplanted kidney, on Hemo dialysis (which he had never had before), Chemotherapy and much more. My son suffered before he died and we didn't have a warning.