Wow, he's doing great.

Drawing with the occupational therapist
on Monday.  They're working on circles.
Okay, I admit it, this blog might be a bit of a downer.  I mean,. I may sometimes lapse into cautious optimism (with a heavy dose of future realism), but I don't think anyone would call me a pollyanna.  So you may understand how difficult it is for me to say what I'm about to say.

Wow, he's doing great, I'm really, really happy!

He is doing great. There's just no other way to put it. (And trust me, if there were, I'd find it.)

The quick summary is that his energy and mood during the day are great for what he's going though, and pretty decent even without that.  During the day, he's basically like a kid with the flu.  He might get up and play for a few minutes, or enjoy a short tickle game.  But mostly, he's content and comfortable just snuggling up on your lap.

Thursday - Sunday night he had some problems with nausea and vomiting.  There's nothing left in his stomach at this point, but he's bringing up a fair bit of bile.

Sunday and Monday night he had a couple episodes of pain each night which we treated with morphine.

Monday morning while he was asleep he got some platelets. (Thanks donors!) Which is completely normal.

Monday morning he developed a fever of about 101-102, so they put him on a third anti-biotic, vancomycin. By this morning his temperature was back to normal.

Yesterday evening, Sarah and Caleb came by and the four of us snuggled up on the bed and watched a movie.

His blood work and liver function look fine.  No signs of organ problems from the chemo.

His eating petered out on Sunday.  Sunday night the doctors started him on TPN.  So he is getting all of his calories and nutrients IV at this point.

I think the biggest news is that he's not in constant pain and doesn't yet need a continuous morphine flow.  The pain he's experiencing overnight seems to be centered in his mouth and throat, so he may have some sub dermal mucositis from the chemo and radiation.  His diaper area looks great.  His skin under his diaper is darkened, but I wouldn't classify it as even as bad as a standard diaper rash.

Shellacking front and back with desitin.
I was looking back at our journal entry from about this point in Ethan's first transplant.  At the same point last time, Ethan had a day or two of moderate to significant pain and we were playing catch up and trying to get ahead of the pain.  Also at this point, his diaper rash was much more advanced.  The skin there eventually cracked and Ethan later developed an e-coli infection.

In short, I couldn't be happier with how he's doing today.

One of Ethan's IV lines came undone this morning.
Since there wasn't anything going IN and the line wasn't
clamped, blood started flowing OUT of the line.  It
certainly got my attention, but just required a line change
and hooking him back up.  Ethan was content to watch
Despicable Me throughout. 
Looking down the road. (Yeah, you knew I had to go there.) It's highly likely to almost certain that his pain is going to get worse in the next day or so.  The doctors, nurses and I are all talking about putting him on constant morphine as if it's a foregone conclusion and the only question is when.  And really, it is.  The trick is getting over our parental pre-disposition against over medicating our kid and get the constant morphine started quickly.  We do need to stay ahead of the pain.  It takes a lot of time and undue stress for Ethan if we get behind the curve and have to play catch up.

Infections are and will continue to be a constant concern.  At the moment, Ethan's on three different antibiotics, an antifungal and an antiviral medication.

If all goes well, we should see signs of enfraftment in another 8-10 days.  That will bring along its own set of potential complications.  But that's a concern for another day.

Today he's doing great and we're very happy.


Anonymous said…
Happy for Ethan, very happy for you!
Rike Family said…
Wonderful update! You do such a great job writing these updates. Glad to hear that Ethan is have a great day.
Wendy B. said…
Happy Dance in honor of Ethan...and-a-one-and-a-two!!!!
Gordon said…
God Bless You All. this is wonderful news.Blood cells keep doing your thing.
Cheryl Garris (Mom to Andrew MPS II) said…
Wonderful news! I am so happy that things are going well!
swijenaike said…
Hi Todd and Sarah, I can't thank you enough for keeping us part of your journey with this blog. We are sending all the good vibes in the world to Ethan. So glad to hear some good news, albeit the pain.
Nguyen said…
Thanks for the update, Todd. I am happy to hear such great news!
Anonymous said…
Sorry to hear the morphine had to get started but it's great you're pleased with how he's doing over all.
You're ever in our thoughts.
Marionette & family
Sally said…
I love the pictures--keep them coming. It made my day to read this news.
How great to hear such good news! We're thinking about you guys! Have a good Easter!