Super Hemo

Just a quick update on where we are with Zander's inhibitor. When we did his last recovery study (take blood, test for factor levels, give factor, take blood 30 minutes later and check levels again) for a severe hemo his levels should be almost 70 percent but could be higher (that is good, considering he is less than one percent usually). Well, he was at 32 percent. Not great, but could be worse. His inhibitor level is really low but we learned that some inhibitors CANNOT be detected by the test they do. But, because his factor level tops out at a measly 32 percent tells us he still has an inhibitor. So, we will continue doing SUPER doses of factor. We can't think about port surgery until we get his levels up to that 70 percent range. No surgeon wants to get a call that they have to do surgery on a hemo whose levels are still so low...As far as his picc line it is great, we get the dressing changed weekly. We are regulars at the pharmacy picking up boxes and boxes of factor to keep up with his daily infusions. Life is good.
note: we keep a sock on his arm to hide the picc (not from the world, mostly from his busy hands)