Monday, March 31, 2025

Day +20

 Day +20

WBC: 1.1 (same)

ANC: 160 (down)

Hemoglobin: 8.4 (up)

Platelets: 17 (up)

Astoundingly yesterday's itty bitty platelet bag managed to give him more of a boost than the larger bag the day before, but still not to the level that he should be at, which meant it as another platelet transfusion day.  More on that later. His WBC is the same, which is okay- we will take stable over a step back.  His ANC is down, but not a lot, and a bit of bouncing around is apparently normal so we are not worried.  His hemoglobin is up from yesterday (8.3). Does this mean his body is starting to make Hemoglobin? Not sure, but it was a happy surprise this morning!  I was thinking that we won't be able to celebrate his last blood transfusion, because we won't know it was the last until quite some time after it has happened! 

ZiLong developed an allergy to red blood cells over a year ago, having an allergic reaction every time he received transfusions.  This was always in the form of hives, and no matter what sorts of pre-meds/interim meds/post meds we tried, the hives always broke through.  In line with our Oakland Hematology team and against our local Hematology team's recommendation, we switched over to washed blood around 4-5 months ago.  It resolved the problem fully and he never reacted once to washed blood, and we never saw a reduction in the efficacy or life span of the washed blood that our local hematology warned us about.  

Because of this reaction to red blood cells, we initially started off the platelet transfusions with a similar methodology they called "volume reduced".  I believe they remove some of the plasma which they said is what was likely causing the reaction.  He did great with the volume reduced platelets, but because of the VOD, he could not get enough platelets from the volume reduced because his liver has been sucking up all the platelets.   They switched 5 days ago to regular platelet transfusions with hopes of getting his platelet level above that 30 threshold.  The first 2 days were fine- they pre-medicated with benadryl and he had no reaction.  The third day he had hives, and the on call Dr for the week said "it's probably just that donor, he did not react to the other days of platelets."  I suggested that this is how it started with blood as well, but agreed to go another day and see if he had a reaction.  Day 4 of regular platelets was an extra small bag, but he did not react- GREAT!  Today was a different story.  Today he had a normal size bag and had been pre-medicated with benadryl, but within 10 minutes of finishing the platelet transfusion, he started to shiver almost violently with cold and got really pale.  We called the nurse in and then the NP, and then ultimately the Doctor came.  We had him covered in 4 blankets and a heated blanket and he could not shop shivering.  He spiked a fever and while all his other vitals were stable, it was very tense and he was very scared.  Once they determined a plan, they gave him extra meds and pulled blood cultures from his line and will test the remaining platelets in the bag as well to ensure there is no infection.  The doctor and NP felt the reaction was an allergic reaction to the platelets, so we need to go back to volume reduced platelet transfusions, but we may need to do two transfusions a day. 

Throughout the 20-30 minutes this was happening, we saw our NP gently re-direct the nurse on duty to prioritize the meds first over the blood cultures (which were less time sensitive), continously ZiLong, consistently check his vitals, and message with the doctor all at the same time.  In retrospect, I can't figure out how she so effectively managed to do all of those things at the same time.  She was amazing, and once again I am reminded of just how lucky we are to be with this team.  Caitlin is our hero of the day, and are are so grateful for this exceptionally kind and skilled team.  

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