Day +134 - Day +141

2/23/16-We found out our contract has indeed expired with the pharmacy at COH.  That would have been good to know earlier.  We were only granted a 3 month contract since that is the length of time the average patient has a Hickman line.  Leave it to Steven to be an overachiever.  The RN we spoke to last week called our case manager and we were set up with a pharmacy that mails the Hickman supplies to our home.  It looks like we only have to satisfy our deductible and won't pay any extra.  I have to be on my "A" game and make sure I don't run out of any supplies since I have to order them now.
Steven's counts are the same as last week so we are waiting for our unit of blood.  It takes about a day for the blood to make him feel better making Thursday his best day.  Our doctor eluded to possibly not need weekly clinic visits.  It all depends on how cooperative the new RBCs will be and when they will present themselves.  Each week, the unit seems to last a little longer so we have our fingers crossed for every other week soon.
Since we are always here over the lunch hour, our big question is what is the soup of the day.  It's the only thing he can eat in the cafeteria due to the restrictions...no lunch meat unless it is heated to 160 degrees and no salads.  You'd be surprised how much that eliminates!  I can automatically eliminate any soup with a tomato base...we found out over the weekend that is a trigger for nausea.

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.

Day +113 - Day +118

We got good news for the first time in awhile.  Steven's WBC was in the normal range, 3.6.  It hasn't been normal in over a month.  His platelets were even higher today although they have steadily been in the normal range.  The RBCs are still non-existent but we know that is expected.  We are waiting for a unit of blood to be ready.  Because we have been and will continue to receive blood every week, they are increasing the Jadenu (Fe chelator).  Since he has been taking this medication at night, he hasn't had nausea associated with it.  We will see if increasing it makes him more nauseated again.

There was a lot of finger pointing today between blood bank and the nurses.  The upshot is the unit of O+ blood just got hung at 1:15pm.  It was ordered in clinic at 9:30am... I can't think of anything nice to say so based on my upbringing, I won't say anything at all.  We won't be on the road until 3:30ish...
I'm looking forward to having our life back.