There is a lot to catch you up on since we have been home so I am going to enter this entry in the extended entry section.
We are going home to Wilmington tomorrow July 31, 2006 after clinic. Cooper has exceeded expectations. His platelets are now normal at 157 and his hemoglobin is at 11.5. We will no longer be needing platelet and blood transfusions. Yea! He is eating over 300ML per day along with pears, bananas, carrots, and sweet potatoes which are his favorite. His TPN has been decreased in volume from 560 to 360 over a period of 12 hours. Hopefully if he continues eating as well as he is, we will be off of the TPN soon.
Cooper is doing very well. As of last Thusday, his platelets were at 115. His hemoglobin was at 10.9. Dr. Gilman said we will probably not need blood transfusions or platelet transfusions anymore. We are so excited yet so scared at the same time.Hisfeedings are still day to day. He eats well one day and then he eats poorly the next. But he is doing a lot better than 2 months ago from 10ML per day to over 100ML per day. We are going to try to cut back on the TPN(vitamins and lipids through his central line into his veins) from 16 hours a day to 12 hoping his appetite increases. His poops have also dramaticly changed from 10 a day to 2. His beautiful cheeks are still chubby but have gone down dramaticly with the weening of the steroids. They are slowly weening his slew of meds also.Cooper is the sweetest, happiest baby. He is constantly giggling. Although, quite a bit behind on his motor skills, cognitively he is doing very well. He is so alert and aware of his surroundings, it is unreal. Thank you for your many thoughts and prayers and donations . We should be coming home real soon!
Sorry it has taken so long to hear fom us, there is so much to tell since our stem cell transplant on May 2. See extended entry for after tansplant details. We have been going to clinic for the past 3 weeks twice a week . The first week he received blood and platelet transfusions. Today we had great news! After his platelet transfusion his platelets dropped from 67 to 31. He then increased to 41 and now he is at 61 today on his own without a transfusion. Thank you Dr. Gilman and thank you Eric(dad). Your stem cells are engraphing. His hemoglobin is at 10.2. Go Cooper. We are still struggling with the feeding but he is cutting two teeth which we think has a lot to do with it but overall, he is doing great! Thank you to all of Wilmington, Carolina Beach, Burgaw and all the wonderful people in our community for all of the fundraisers you have participated and donated to our precious baby Cooper. There is no place like home and we can't wait to get there. God bless !
Coop is doing well, his platelets keep dropping and they are giving him transfusions for that but otherwise he is doing very good. He has two teeth coming in so it can be hard to tell what is causing him not to feel well sometimes.
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.