Gimmicks

Rarely a dull week around here.  When Annie had her emergency visit to the hospital last week for a bloody nose an ENT doctor was called in to help.  He made the suggestion of using tongue depressors bound together to help with nose pinching.  We thought this sounded great.  I modeled the contraption shown above for a steady stream of nurses and doctors who had never seen this before.  It seemed we'd found something that could be of help in the future.  And then Monday night rolled around.  Just as we were sitting down for dinner Annie sprung a bloody nose.  On went the sticks.  Next thing I know Tom's grabbing a bowl into which she started spitting blood.  This bloody nose seemed to be dripping down her throat and into her mouth.  It really looked horrifying and we debated between 911 and rushing to the hospital.  Hospital won out so off went Tom and Annie.  Again after hours of pinching and waiting they finally got a platelet transfusion and came home after midnight.  There was a desire to also give her hemoglobin but that required admitting her to the hospital and they'd had enough for one night.  I now wonder, were the sticks the problem?  We'll be going back to pinching and then maybe segue to the sticks to experiment next time.

We still had to go back Wednesday for the hemoglobin transfusion.  After the hours it took to wait, register, wait, triage, wait, get poked, wait ... it was learned that her hemoglobin had gone up and she wouldn't need a transfusion. Yeah. Again we witnessed the pattern of curbing her bleeding with platelets resulting in keeping her hemoglobin longer.  Catch 22 - they don't want to transfuse platelets but that means we need to transfuse hemoglobin more often.  Nonetheless we have a break, at least in terms of the schedule, until next Wednesday.

Meanwhile we're making appointments to meet with transplant teams and trying to get her a prescription to a medicine called Eltrombopag.  Tom read about it clearing clinical trials. It's for in people who have trouble making platelets.  The doctor said Annie could try it but we're on hold waiting for them to figure out the proper dosing...wait...wait...wait.