Day +27

 Day +27

WBC: 1.1 (down)

ANC: 120 (up)

Hemoglobin: 8.5 (down)

Platelets: 11 (WAY down)

It was another platelet transfusion day today, which meant a nap for ZiLong and a nap for me in the "not so sunny" window today.  He hates the benadryl he needs to get before platelet transfusions, but it keeps him safe.  The medical team has determined he has so many antibodies from years of getting blood transfusions, that he should now be getting HLA matched platelets.  This just means that he can only accept platelets from people who do not have any of the same antibodies that he has, because his body is recognizing the antibodies in platelets as an illness and as a result, it will attack the platelets with those antibodies.  The blood bank was initially pushing back last week, but after further testing, the medical team and the blood bank agreed this was the right thing to do.  Today received typed platelets (from his same blood type) as they had a unit expiring today, and tomorrow, since we assume he will need platelets again based on how low they were today, he will get HLA matched platelets.

He had fun playing a little soccer in the hallway with one of our favorite Child life team.

ZiLong was feeling VERY full of energy tonight and decided he wanted to do laps on the floor.  He asked how many laps from door to door made a mile- it turns out is 47.  So...he did 101!  But he didn't just do 101, he did half of them running!!  He is definitely feeling good energy wise, but we can't bust out of here just yet.  There are certain criteria he needs to meet, and he is still on round the clock meds for his VOD for his liver.  We are expecting about 1.5-2 weeks more before we can go to the Ronald McDonald house.