2/14

Happy Valentine's Day, everyone.  We got some "special" surprises today.

John's morning blood sugar was 98; he didn't need any insulin.  What a great start to the day!  Photophoresis went smoothly and his skin still looks great with the reduced steroid level.

Today's blood tests included one for tacrolimus.  We didn't know that was ordered so we hadn't held the morning dosage.  This isn't much of a problem; the test can be drawn again tomorrow and this time we will hold the morning dose.  The results have been too high lately and the dosage was reduced a bit several days ago; hopefully tomorrow's test results will be in the right range.

One effect of tacro is diminishing magnesium levels.  John's Mg has been slowly getting less and less; Tuesday he needed a Mg infusion.  We were looking forward to getting home right after photophoresis today since that problem had been dealt with.  You can see where this conversation is going....  The Mg level is still too low and John is having another Mg infusion right now this afternoon.  It takes 2 hours.

We also learned there will be a new treatment for his CMV which has been trending upwards.  He'll receive cytogam (IVIg) 3 times this week beginning tomorrow.  This is an infusion of immunoglobulins that takes approximately 4 hours.  So, we will begin that tomorrow, Friday, and continue it Sunday and Tuesday.  Sigh.

Finally, the cidofovir used to treat the CMV is being increased to once a week instead of once every 2 weeks for at least this week and next week.  We're going to have to start using poster boards instead of a page of paper to chart all of his meds, appointments and treatments.  But, the good news continues to be more forward motion and improvement than falling backwards.  Say a prayer that the prophylactic CMV measures have the desired effect and start to knock those levels down.  BTW, John's nurse today said he was a "special case"; we all knew that already :)