So we were hopeful that we would make it through Christmas without a transfusion. (After all, we postponed our trip by one day for transfusions right before we left). But tonight at 9pm we ended up at Children's Hospital in STL. John was being very lethargic, sleeping all the time, and his nursing was getting weaker by the hour.
The staff at Children's ER was great though. They got us in pretty quickly, heard all our concerns, reviewed John's medical records (thankfully we brought them with us from NC) and got John some much needed blood. And for the first time, John was matched with A- blood! They did everything in the ER - which helps because we have NC medical insurance - and we were discarged around 3am.
We know were moving back the STL area, so we are now trying to get our records transferred to Children's Heme/Onc Clinic. We'll be having several more appointments with the NC clinic before we come back, but better to start the process now.
Keep us in your prayers.....this is going to pass!