Since coming home we have been keeping very busy. Ian has had appointments on Tuesdays and Thursdays at CHOC, getting a platelet transfusion once last week.
Home care involves a maintenance of his broviac catheter -daily Heparin flush of his broviac lines, weekly cap changes and dressing change, twice weekly injections and sixteen daily medications (all which are supposed to be taken orally – ha!).
Ian has figured this all out and now regularly spits out his medications and freaks out anytime I lay him down, even if it is for a diaper change, since he isn’t sure what I might have in mind.
The good news is at our last appointment we were told that we could reduce the injections and clinic visits to once a week. They also drew another chimerism study on Tuesday this week, and we should have results soon.
Ian is doing really well, they see no signs of graft vs. host disease and are very pleased with his progress.
again, so many thanks for all the prayers. ~~