Joseph home 7 months

Joseph and Thalassemia
The biggest question most prospective adoptive parents have is what its really been like. Well its been way less of a big deal than we were expecting. I blogged my friend's experiences and ours have been very much the same. We schedule for a hemoglobin check 3 weeks after his transfusion. At the same time we schedule his transfusion for 3 weeks and one day and also a HGB check and transfusion days for 4 weeks after last transfusion. Sounds confusing? Example: If his last transfusion was on the 1st then we would book appointments for the 21st and 28th for hemoglobin checks and on the 22nd and 29th for doctor exams and transfusions. If his HGB is 9 or above on the 21st we cancel his 22nd transfusion appointment and return for HGB check on the 28th. At that time his HGB has always been below 9 and we use our 29th appointment for transfusing. We do not check HGB and transfuse the same day because there is a long 2-3 hour wait to get the blood ready. So the nurse calls me in the afternoon with the HGB results and at that time she orders the blood for tommorrow. Type and cross match is very detailed. Not only do they get his correct blood type but they are matching as closely as possible his antibodies which change daily. A blood draw to match blood off of is only good for 48 hours in our hospital. For that reason we will never be transfused on Mondays.
HGB checks are taken from his inner elbow just like from anyone in the US. On transfusion day we go downstairs to the Children's Day Hospital where he is given a private exam room. The nurses start an IV and hook up the blood. Not so fast... Joseph completely freaks out if they try anywhere other than his wrists. We assume from scarring and his attitude that is where they transfused in China. Back of the wrist, front wrist and just last time his pinkie knuckle. Ouch. In between the transfusion days I don't even think about Thalassemia. He has just as much energy the day before as the day after so its not noticable to anyone. He's even been playing Tee-Ball right after leaving the hospital as well as the day before his transfusion.