Day +119 - Day +133

2/9/16-After our 7 hour extravaganza last week at COH, things are moving a little faster today.  That might be because of an inquiry email to hematology... I like being Steven's advocate.  His blood counts are even better this week.  There has been a slight increase in WBC's and RBC's.  His WBC's are finally in the normal range but the RBC's are still lagging.  He is getting a unit of O+.

So here's a fun fact... Steven typed as an O this morning.  He typed as a B last week, his birth type.  He's thinking his B cells have circulated out and the O is purely from all the transfusions.  Hopefully his donor A cells will become victorious soon.

We are seeing the endocrinologist today.  Looks like it is status quo...check glucose levels before meals.  Hopefully the increased glucose will go away after he is off of some of the medications.

2/16/16-They forgot to call our name for the blood draw this morning.  We are already an hour behind.  Labs look the same as last week and are waiting for our weekly unit of blood.  I asked a bazillion questions today:  flu shot? no, childhood vaccinations? no, physical therapy? ok, teeth cleaning, yes, and I also need more Hickman line supplies, no problem.

Steven still has his Hickman line...thank goodness.  With weekly blood draws and an infused unit of blood, that would be a lot of sticks by a phlebotomist.  He was getting hard to stick before we were admitted, I can't imagine what he would look like without a line.  I needed more supplies to change the dressing and heparin to flush the line, which I do every day.  The COH pharmacy informed me that our contract is over and I would need to pay out of pocket.  A box of heparin alone is over $100 and I needed a few other supplies totaling over $300.  Back to clinic to speak with one of the RN's who made several calls and found out our contract is indeed over with the COH pharmacy.  But because Steven has medical need for a Hickman (who has one inserted in their chest for fun), our insurance company has to negotiate with a 3rd party vendor.  I'm not sure what this means but I get the feeling this is going to chip away at our empty nest funds......oh well, it could be worse!  The RN gave me enough heparin for the week.  We will see how this plays out at our next clinic visit.  Steven is getting another unit of O+ and then we will be on our way.