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.