It was good to wake up to JT’s musical voice this morning.  Actually, several times this morning.  And early.  His feeding tube looped out of his nose in the middle of the night prompting a phone call to Home Health and an amateur re-taping job by flashlight.  But at 7:30 he was up and raring to go.  Jodi and I, on the other hand, were both a bit groggy. We managed to get the 8:00 a.m. IV and oral meds on board with the help of yet another Home Health nurse on the phone.  I slept for a couple hours this morning and Jodi sacked out for a few late this afternoon…by this evening the routine wasn’t quite as daunting and we pulled it off more gracefully.

When Dr. Filipovich said we’d be full-time nurses upon discharge, I thought maybe she was exaggerating.  She wasn’t.  No hyperbole whatsoever.  It’s full-time plus overtime.  It’s all the time.  From 6:00 a.m. until 10:00 p.m., almost continuously, there’s something to do or prepare to do:  draw up one of a dozen oral meds (many taken three times a day), administer steroids, program the IV pump, administer IV meds, program the feeding pump, reprogram the feeding pump, take his temperature, flush the CVC line, boil syringes, etc.  We’re hopping.  But what they told us is true – though it is time-consuming, we’re already developing a comfort level with it all. 

At our afternoon hospital appointment they drew blood and checked him out and everything continues to look good.  Praise God.

It’s good to be free.  While I took my morning nap, Jodi packed up JT’s feeding pump in his little explorer’s backpack, hung the overflow bag from a luggage hook in the van, and took him for a drive.  They saw a big train and some Christmas decorations.  Jacob even spotted some deer.  He was all about it.  And after getting permission from the BMT physician, we even took a five-minute walk to the corner and back (with his mask on of course), his first moments outside in what seems like forever.

Just interrupted there by the 10:00 p.m. feeding alarm – three more cans of feeds, eight more hours for which to calculate rate and dosage for the pump.  I’ve got five different alarms programmed into my cell phone; it’s beeping at me all day long to remind me of the next thing to do. 

Please continue to pray for the big three:  protection from infection, strong and enduring engraftment, and no GVHD.  Thank you.

Full-time nursing is occupying all of my mental energy tonight.  So I’m out.  I need to bang some sleep before the 2:00 a.m. diaper change...