tag:,2007:/13 2007-09-03T16:42:04Z Movable Type Publishing Platform 4.0 tag:blog.cure4cooper.org,2007://13.4304 2007-09-03T16:27:55Z 2007-09-03T16:42:04Z

Cooper http://www.cure4cooper.com Well, Cooper has been in the hospital a lot since my last journal entry. He spent halloween and his first b-day in Chapel Hill.The scabs in his nose turned out to be a fungal infection. He had several debreedings of his nose which is where they go in and delicately scrape the fungus out of his nose. The fungus and debreedings ate through his septum which they said was easy as pitching a tent to fix. The fungus then spread to his knee causing osteomyalitis again. This went on for about a year. We are finally getting the fungus infection under control. It is almost gone, but his knee had lost the range of motion from the damage done to it. With physical therapy and a brace he is starting to put weight on it and getting ready to start crawling. He is eating a lot more and up to 14lb5oz at this point. We have had several blood transfusions and a boost of donor cells. He got another infection in his lungs that put him back on oxygen and back on the ventilator and in the PICU. Let me tell you, we had no idea that was coming. He was also in the hospital for his 1 year anniversary of his stem cell transplant. It is a slow and always a waiting game to see when his immune system is going to kick in but he is getting a lot better. We have been home now for up to almost 4 months now and it has been so nice to see Tanner and Cooper get to play and love eachother and to be a family again. He is still on oxygen but just below a 1/2 litre which is just a whiff of air. Thank you so much for the many prayers, thoughts and generous donations you have given my family. We are truly blessed. tag:72.34.32.113,2006:/~atrevino/cure4cooper//13.1391 2006-10-19T15:12:41Z 2006-10-30T20:41:48Z

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....

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 arrived home on July 31 with much delite and relief. Cooper was doing well eating up to 750 ml in a day. He was taken off TPN on Aug 9th. On Aug 12th we went to clinic. His WBC(white blood count) was up to 25000 which means he was trying to fight some kind of infection. His liver enzymes were up, which later was attributed to having taken a dose of azithromyacin the day before.We were admitted into the hospital. He grew a positve blood culture the next day called entro-coccous(bacterial infection) that was initially in the urine and treated, then somehow moved to the gut. He developed a rash which I think was a drug reaction to vancomycin, but they attributed this to GVHD(graft versus host disease). We were treated and sent home on antibiotics after 5 days. We were having difficulty with Cooper breathing at night due to his nose getting clogged up, I don't know any other way to say it with red scabs. He has never had a runny nose. His mucous has always been hard red scabs sometimes the size of his nasal septum. He has a very tiny nose and has barely grown due to the need for steroids. We went to the hospital on Sept. 5th to get Cooper sedated so they could look down his nose to see if there was anything growing down there. The results were his nose needs to grow.They did see some mold in his nose but nothing terribly alarming. He was sent home with a fungal spray.On Sept 12, we were readmitted due to left ventricular hypertrophy of the heart. Due to being on the tacrolimus(drug used to prevent gvhd) for the amount of time he was, it caused this part of the heart to thicken, and his Magnesium to go down in his blood. They gave him a beta blocker called Endural and monitored him for the weekend to make sure he was ok on this medication. During this stay, we found out he was desaturating at night. This means the amount of oxygen going to his body was going down when he was sleeping. We went home on oxygen at night only. We were then readmitted on Sep 29th for a positive culture for entra-coccous. They did a peripheral(blood out of the arm not out of his central line) draw and it was not in the blood so they treated us with antibiotics for 7 days.They did not think it was in the line but on the hub of the line. We got a chest x-ray and cat scan of his chest while in the hospital and it showed a pea-sized nodule on part of his lung. Cooper then had a lung biopsy and lung bronchoscopy on Oct 5th. We got the results on Oct 10th that showed nocardia(rare bacterial infection in immune suppressed patients) and pulmonary alveolar protonosis(too much protein in the tiny air sacs of the lungs). He will be treated on Septra for six months. He is on oxygen all day now through a nasal cannula at around .3 to .5 percent of oxygen which is not much but it is needed so he will not desat. Dr Gilman decided he wanted to give Cooper a boost because his cells have been slowly coming back at 32%. We received chemo on the 16, 17, and 18 of Oct., will have a day of rest and then put Eric's stem cells and t-cells in Cooper today. So, in a nutshell, in addition to coming to Chapel Hill once a week for clinic visits, we have been back in the hospital quite a bit since we went home. Although this visit that was supposed to be a three day visit, it has now turned into a three week visit. Cooper is hanging in there like a champ as usual. He is so strong and so happy. Keep the prayers coming. God bless. tag:72.34.32.113,2006:/~atrevino/cure4cooper//13.1390 2006-07-30T17:04:32Z 2006-10-30T20:41:48Z

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!...

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. tag:72.34.32.113,2006:/~atrevino/cure4cooper//13.1389 2006-07-03T13:49:32Z 2006-10-30T20:41:48Z

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...

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! tag:72.34.32.113,2006:/~atrevino/cure4cooper//13.1388 2006-06-19T18:07:08Z 2006-10-30T20:41:48Z

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...

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 ! Cooper came off the nasal cannula(oxygen). We never thought we would see the day he would breathe on his own again but by the grace of God he did it.He began physical therapy and started meeting markers pretty quickly. His spleen and liver decreased dramaticly so he could actually kick his feet over his stomach which up until this point was impossible because his stomach was so distended. He found his feet and what an amazing thing that is to him.Cooper developed a gvhd rash on day +6 after the transplant. It looked like tiny red dots around his eyes and raised spots on his arms that spread down his torso and down his legs, in the groin and armpit areas after a day.That is where his body was fighting Eric (dads) stem cells. He was treated with a steroid cream and his iv steroid was increased. It seemed to help. The rash went away within 21/2 weeks and has not returned yet. He had a lot of problems with tolerating feeds . He got sick pretty often. He also had chronic diahrrea (which he has had from the day he was born)and inreased heart rate and respirations.We moved to the floor after being in the pediatric intensive care unit since the beginning of February on May 17. His ng tube was taken out on May24 and he was introduced to the bottle for the first time. After two weeks we were discharged and moved into an apartment 10 minutes from the hospital because we have to stay in the area for 90 days after transplant. tag:72.34.32.113,2006:/~atrevino/cure4cooper//13.1387 2006-06-15T16:27:14Z 2006-10-30T20:41:48Z

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...

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. tag:72.34.32.113,2006:/~atrevino/cure4cooper//13.1386 2006-06-10T17:59:40Z 2006-10-30T20:41:48Z

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....

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. . 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. tag:72.34.32.113,2006:/~atrevino/cure4cooper//13.1385 2006-05-03T19:26:44Z 2006-10-30T20:41:48Z