On Tuesday, I took Sean in because his nose had been running and the skin around the entrance site of the central line was red and a little oozy. They did a culture on the site and in his nose. The nose swab started a nose bleed. They sent us to the infusion center for platelets before releasing us to come home late that evening.
Wednesday was the Developmental Evaluation, he's normal. hehe Afterward was the monthly IVIG. They do routine blood draws that showed his hemoglobin levels were very low. Since we were scheduled to be admitted the next morning, they decided to admit early to give him packed red blood cells.
His central line got a hole in it Wednesday during a blood draw. The type of line he had was very very tiny due to being an infant size double line. Other patients have had trouble with the line being too fragile. They had to stick him 3 times to get an IV started (the reason we have a central line!)
Thursday afternoon, they were able to get him into the OR to replace the broken line. He now has a single line. They will put in an additional singe line (so he'll have 2 singles) or replace the single with a double in a week or so.
Due to the hemoglobin levels, the redness around the line entrance, and replacing the original line, all of his transplant dates are now delayed one week. We will go back on Thursday to start Campath, be home for 10 days, then check in for our long stay on Jan. 27...unless something else changes.
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