Hematology follow up

Little man has went through oral iron supplements- responded well too and then did not respond at all, and then actually seemed to have a reaction to (a new formulation Rx), hemoglobin levels dropped to 5 in October- blood transfusion necessary.  Hemoglobin rebounded to 10.5 following blood transfusions, wonderful!  Continued oral iron supplements, and a mere 1mo.later, hemoglobin back down to 6 (following a soy-challenge and discovery of villous atrophy).  Hematology consult, with recommendations for IV iron therapy for 10treatments (2x/week for 5 weeks).  That's a lot of IV sticks, PICC line placed instead and given parental nutrition along with iron therapy via the PICC line for 4 weeks, followed by 1 more week of IV iron.  

The last treatment was one week ago, a lab draw a few days later revealed a hemoglobin of 10.8!  His body responded well to the IV iron therapy and rebuilt his iron stores and red blood cells.   Anemia will always be a component of his diagnosis and he will receive IV iron periodically until we can get him past the curve on his tiny menu to some more iron-rich food sources (ie- MEAT!).   

With the news of the restored hemoglobin levels, we were finally able to remove the PICC.    Little man had the same PICC line for 38days, we kept it clean and intact and NO infections!  Whew! And it is now out - he got a treat last night, and then one just for the heck of it this morning- a full-soak-up-to-his-chest- BATH!  A no-soap bath, but still, playing in water, soaking bath is a treat.   We had given him a few baths over the course of the weeks, but with an arm wrapped in plastic, it was more of a chore than a relaxing activity.   Sponge baths were easier.  

We will do lab checks every 2 weeks for the next few months, as well as IV iron therapy once a month for the next 3 months.  We will not let any slippery slope land us back to a PICC line again.....we hope, and pray.  

Now, onto food trials....soon....