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Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Sunday, August 4, 2013

T+11 Growing Cells (and fevers)

Good news today. Coleson's WBC is at 0.6. Amazing jump up. We don't know for sure if these are the Donor cells or his own but we assume they are donor cells reproducing. We won't know for another 10 or so. His Neutrophils are at .4. These are the body's first line of defense in fighting infections. They destroy foreign bodies. Neutrophils have to be at 0.5 for 3 days in a row for him to come out of his room (with a mask of course).

On the flip side, his fever won't break. It's oscillating b/w 101 and 103. We have stopped giving him Tylenol for a while as he has been out it non-stop for 2 - 3 days. He doesn't appear to be in any pain and since fevers are normal reactions after BMTs, we are giving his body a break from at least 1 med. He is on a couple antibiotics including Vancom
ysin and his blood cultures haven't started growing anything. His blood pressure and heart rate are both up. So of course, he's on more BP meds. His Oxygen saturation level is between 95 - 99% so at least that's good.

My concern now is mostly around VOC (venous occlusive disease). This is where the liver gets small clots in it and can't filter them out. This can be very serious and has taken the lives of other Hurler BMT kiddos. The Drs. don't seem to be concerned yet about it but as a mother, I am watching all his stats closely, making sure he is peeing, and that he isn't turning yellow. They are giving him a second dose of Lacix (a diuretic) so he continues to pee. His Bilirubin is high at 2.5, platelets and RBC are low at 11 and 3.32 and hemoglobin is low at 9.0. His creatinine is low at .18 but not out of range yet. I know you might now understand all these numbers (and these are only a few of the daily stats I get) but am writing them down for historical purposes.

He is sleeping most of the time now and again doesn't appear to be in pain but I can see it in his eyes that he just wants to feel better. The WBCs will help so I pray they continue to climb and that his other VOC indicating parameters look better tomorrow. Please help me pray for him.