Day +11

Today Kyler had Ct scans to see why he is still having fevers and ultrasounds for his liver. His live, head, pelvic area and abdomen came back great. However, He does have a lung infection that is either fungal or bacterial (which would be from the Staph) He will more than likely be having his lumen hickman (CVL or "central" line) put back in wednesday and the triple lumen removed so while he is under for that then they will do either a lung wash or a biopsy on the lungs to see exactly what kind of infection it is. Today he was taken off of blow by oxygen and put on a nasal cannula so that they know he is getting all of the oxygen. Once they find out exactly what is causing the infection they will be able to treat it better. In the meantime, though, they did go ahead and start him on an anti-fungal medication to start treating it since they are pretty sure that it is more fungal. Everything else is still the same. His WBC's are fluctuating from day to day and he had to have platelets today because they were down to 11K. His neutrophils are comig up some. They still arent high enough to actually "count" in terms of numberrs but they can be seen in the cultures which is great. His mucositis is at its worst but this is probably the worst it will get. Hopefully in a few weeks we will see engraftment. On a side note: Today he had his CT scan which children are sometimes/ usually sedated for because of the burning sensation that the contrast gives them. Well because of Kylers heart rate/ oxygen levels and pulse they didnt want to sedate him so he was wide awake. He did AMAZING!!! They let me stay in there with him and I held his hand and sang to him and talked to him and he only got upset once because they told me to hold his head and not let him move it and he couldnt see me but once I started talking again he was fine again. He is SUCH a strong little boy! They were all kind of surprised at how well he did with being still and the contrast not burning. He is a tough little boy! I know God and everyones prayers are helping him through this. Its helping all of us through this. Thank you all for your prayers! They really mean a lot! OH I got to love on him a LOT today which was GREAT! Yesterday he stayed in bed and slept all day and was only up maybe 45 minutes total but today he was wide awake after the CT scan and he wanted me to hold him the whole time so I got lots and lots of love and hugs! TOO SWEET!!! I love him SOSO much! :)