Cooper was born at 11:52 P.M. on November 9,2005. He was breech so he was a c-section. He really gave us a scare. They had to tube him briefly but he finally pinked up and started breathing on his own. He came home from the hospital and what a happy family we made. His brother Tanner, who was 22 months when Cooper was born, just loved to kiss his brother.
After three weeks home, Cooper got a fever. We brought him to New Hanover Regional hospital and he was diagnosed with klebsiella infection and staph aureus (MRSA) infection in his blood. We brought him home and after two weeks his hand was swollen and he was diagnosed with osteomyelitis another infection this time in his bone. The doctors at New Hanover Regional Medical Center working in conjunction with UNC hospital in Chapel Hill put him on IV antibiotics and we continued to give him the antibiotics at home through a central line. After three weeks we brought him to UNC in Chapel Hill for a followup visit on 1/31/06. He was just 9 days short of his 3 month birthday and we have been in the hospital ever since. At the hospital he was diagnosed with a "failure to thrive"(he had lost 2 ounces), splenomegaly (swelling of the spleen and liver) and a rash on his skin. He had constant fevers and battled infections, pseudomonas pneumonia, candida yeast in the lungs to name a few. Many of his central lines became infected. He was given a host of antibiotics through IV therapy, five central lines put in, 2 bone marrow aspirations, and 2 lung bronchoscopies.He was also placed on a ventilator 2 times, once for a week, and the second time for a month. He was finally diagnosed with NEMO with Osteopetrosis in February at 4 months.
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The treatment for NEMO is stem cell transplant. After testing it was found that his dad was the best match. On May 2, 2006 Cooper had his transplant. Cooper has and is fighting back and has truly earned the name "Cooper the Trooper".
After the transplant he has had trouble with GVHD on his skin and tolerating his ng tube feeding due to the volume of the feeding. The ng tube came out Wednesday May 24. Today he took 5 ml by mouth! Hooray!
We are hoping to be discharged from the hospital next Thursday or Friday.
Dr. Frederick Henderson is his infectious disease doctor and has been the driving force behind his diagnosis and care and also his guardian angel since his initial infection. Dr. Andrew L. Gilman is his hematology oncology physician who has directed his stem cell transplant and his aid has been invaluable in Cooper's care. Cooper has spent the majority of his time in the pediatric intensive care unit. Between the staff of this unit and the pediatric critical care intensivists Cooper has been cared for and watched over as if he was their son. We could not have asked for better medical care, they have become part of our family.
A huge “Thank You” to the Ronald McDonald house at Chapel Hill, North Carolina they have made is possible to have our son Tanner with us and made us feel we had a home away from home.
Comments (1)
I just wanted to let you know that I remember those nights in the hospital and being told "failure to thrive" about my son Keith. At that time I felt alone because I knew something was wrong. I wanted to let you know that you are not alone. I will prey for you and I hope the best for you and your family. You are right these kids are fighters and they are stronger then we think!
Posted by Letecia Jones | September 30, 2006 6:32 PM
Posted on September 30, 2006 18:32