Chaos theory

Annie ended up having a red cell transfusion yesterday and, when not scheduled, these take a long time.  Including driving time, it was a nine-hour process.  Since we've been in this phase for a while now some patterns are emerging.

Based on research with cancer patients (who also often need lots of transfusions) transfusing platelets, unless the patient is uncontrollably bleeding, actually impedes the body's ability to produce platelets on its own.  Thus this medical team is comfortable letting her platelet level go to "zero." This is new ground for us and taking a bit of an adjustment.  Similarly there are risks to receiving red blood cell transfusions, as well as the body getting lazy about making cells itself, so the team wants to wait until she feels crummy to give those.

The inherent problem with this plan is that it means we go along until the next traumatic event happens.  Then chaos erupts with a bleeding or pained child, last minute changes of plan, fighting traffic, trying to find a nurse and bed at the hospital....  When I presented this reality to the doctor he basically acknowledged that it's just how it has to be.  Nonetheless the rest of the appointment was summed up by, "it's too early to draw any conclusions."  Annie did get weekly transfusions for two months the last time she had ATG so we're going to be patient and wait until the end of May to start evaluating whether this treatment was effective.  So until then we'll keep tip-toeing through this kind of haunted-house, always on alert for when the next scary event will send us scurrying.