I closed yesterday’s entry by insinuating that I would be taking care of the 2:00 a.m. diaper change.  Jodi wants me to set the record straight publicly – she was the one to apply the late-night butt cream.  However, that also meant that she slept in while I took care of the morning medical routine, and this led to some adventure here at 3429 Cornell Place.

To be honest, I was running a little behind on the 8:00 a.m. IV meds.  And after these come the rest.

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 ...

I don't have many words tonight.  It is good to be home.  Good, but not easy.  The home health nurse arrived at 7:00 sharp and she just left, 3 1/2 hours later.  JT's feeding tube clotted off and she worked to flush it for a long time but finally had to pull it out and drop a new one.  Not exactly the relaxing-evening-at home-just-taking-it-all-in that I'd envisioned.  We're pooped. 

We head back to the hospital for a check-up tomorrow afternoon.  It's kind of like commuting from home now as opposed to living on-campus.  But as you can imagine, JT is a new boy here.  The nurse said two encouraging things before she left tonight:  first, that Jodi and I will be doing this home healthcare routine in our sleep by the end of the weekend, and secondly, that JT will get better exponentially faster here than he ever would at the hospital.  All good to hear.

Up here on the BMT floor, any time you see a parent pushing a blue plastic cart full of toys and clothes out through the double doors, you smile and give a thumbs up, you feel a little envious (and then feel guilty about the envy), you hope for your own turn someday.  You know that they're going home, that on the next trip they’ll be carrying their son or daughter, a beautiful child without hair, with the telltale green mask instead that lets you know we're all in the same club.

Tonight it was me.  I had a blue cart.

My parents and the Aunt B / Uncle Steve contingent arrived for a brief visit today.  Translation:  gluttony.  Lots of homemade food and Christmas presents, a few extra people visiting Room 21, not much time to write.  JT's counts continue to be strong.  Memorable quote of the day was from the BMT attending physician regarding JT's progess:  "He's done great.  I mean, several things could have gone wrong and he'd have still done exceptionally well."  But he also cautioned that it was too early for a sigh of relief.  Please continue to pray for three things:  protection from any illness whatsoever, strong and enduring engraftment, and freedom from any Graft-Versus-Host-Disease symptoms.  Thank you! 

Just before 8:00 this morning, JT leaned over the railing of his hospital bed and said, “Merry Christmas Daddy!”  I heard myself playing the part of the sleepy parent as if it were scripted for me, “Just a little more sleep, buddy.  Go back to sleep for a just a couple more minutes…”  And God bless him, he was quiet until about 9:00.  That’s when Jodi burst into the room with a Santa hat on her head and rousted us out – I tried the same line on her but she was not put off so easily. 

It was wonderful.  She had a little tree and JT’s stocking and a wagonload of wrapped ...

JT’s numbers are good.  The new feeding tube is a 100% improvement and Jodi and I have started to give medicine through it.  So far, no worries.  He donned the green N-95 mask and ventured out into the hallway again today for a stroll.  All cause for great celebration.

Aunt Bec spent Christmas Eve in Room 21 and by all accounts, it was a festive one.  JT unwrapped some gifts and with a “Here you go, Daddy!” he handed me a super-cool handmade gift he’d crafted and wrapped with Bec’s help.  Meanwhile, after I got home Jodi and Justice and I had an opportunity to hang out ...

After living inside the four walls of Room 21 for an entire month, JT stepped through the doorway and into the larger world for the first time this afternoon.  It was a good moment.

But some less exciting things came first.  JT has had an increasingly hard time of it with his feeding tube leaking all over the place; Jodi had to change his soaked clothes several times last night due to leakage.  So today the nurses pulled the old feeding tube and inserted a new one:  not pretty.  I went down to the parent lounge during the procedure but could still hear him screaming.  ...

Jodi is back in the loop and JT is happy about it.  He was beside himself with excitement to see her this morning and was not at all interested in taking an afternoon nap with Mommy around.  When I spoke to her around 9:30 p.m. they were still up and playing in Room 21.

We got our first lessons in home healthcare this morning.  Actually, as I’m fond of reminding Jodi, I was a Pre-Med major during my first year of college before I switched to English/Lit. Education.  So I went in confident, hoping that the long-ago hours spent agonizing over biology, chemistry, and calculus would finally come in handy for something.  Nope.