Thursday, August 22, 2013

Fontan Post Op Day 7: On the move

Oh my goodness, Bodie was on a MISSION today! I'm pretty sure his mission was to tire us out - and he was totally successful!

He was weaned off of oxygen by midnight last night and boy did he take advantage of being untethered today! We walked...and walked...and walked. Totally unassisted. Oh, and ran. And climbed. And stood on the counter at the nurses' station to touch the hanging stars. And said "Jump! Jump!" and was crestfallen when mommy said no jumping yet. 
We negotiated with mommy for 10 minutes about whether or not we were allowed to leave CV Acute to explore other parts of the hospital (although Bodie was quite convincing, mommy did have to put her foot down eventually, resulting in Bodie plopping himself down on the ground and saying he was just going to sit and wait for someone to open the door and then sneak out.). Silly boy!
We called Daddy early in the morning, before he got up here, to tell him all the big, important stuff that had happened since he left last night (it's too bad Dusk couldn't understand what Bodie was telling him, because I was cracking up on my end listening to Bodie excitedly telling Dusk that (i) he had a Biiiiiiig poop; (ii) he took all of his bandaids off and threw them in the trash, (iii) the alarm went off and somehow the nurse "sneaked" in and turned it off, and (iv) somehow, mommy said he "waked" up on the wrong side of the bed this morning - all totally true statements).
We had several friends come and visit us today, including awesome fellow heart mama Abigail, who thoughtfully brought Bodie a stamp set, hero mask and cape. The mask rocked.
 One of our favorite teachers, Teacher Chelsea, also came for a visit! Bodie showed her all of his Treasure Box items.
And goofed off with her (his eyes had been closed in the previous picture - this was his response when I told him to try and keep his open for the picture! Ha!)
 We also spent lots of time in the playroom, making various versions of Mr. Potato Head. 
And wandering the halls of CV Acute, making new friends, including sweet "Lion Heart" Owen and his mommy and daddy. Bodie was enthralled with the picture and asked me breathlessly "Mommy! Is there REALLY a lion in that room???" 
One last walk of the halls before dinner. Joshie Doll got to come on this walk with us. 
And our beloved Brenda. Bodie wasn't smiling in the first pic, so Brenda was trying to show him how to smile. Ha! We love you, Brenda!
We capped off the day with yummy Thai delivery and McDonald's ice cream cones. Bodie wasn't much into eating today (his stomach was really bothering him - I think it was just the process of finally getting everything moving again), but chowed down the rice and ice cream. I'd call that a perfect ending to a pretty good day.  
All snuggled into his hospital bed, watching Tangled and snuggling with his volleyball (signed by his favorite doctors, nurses and visitors). I'm still blown away by how great his color is...

Prayers for tonight include:
1. Bodie maintained his sats pretty well today. He had moments of desats and more purple coloring, particularly when walking around, but nothing as drastic as yesterday. Please pray that he maintains his sats in an acceptable range as his body adjusts to his new circulation.
2. Today's x-ray looked fantastic. We're definitely moving in the right direction. Please pray that tomorrow's looks as good.
3. This kid's skin is a total train wreck right now. Bodie has always had sensitive skin and we have many remedies that have worked in the past that we intend to try once we get home. But we've honestly never seen it this bad. Every single nurse and NP has commented on it, so I know it's not just typical "super sensitive skin." In typical Bodie fashion, he takes it to the extreme. He looks like he has been dragged through a war, particularly at his IJ site and near his chest tube sites. Which he has. But we'd love his skin to not have to show it quite so much. He's irritated and constantly scratching it. We've started applying Cortizone cream, which helps somewhat (at least he's not clawing at his skin anymore).  Please pray that we can find the right mix of creams to ease the poor kid's pain. 
4. Please pray that this kid goes to bed! He is wired right now (typical post-Fontan energy!) and this mama is tired! 


  1. Hey Bodie! Wow! You rock little guy! I am so happy about how you are doing. So great to see all the smiles. Keep it up!

    Love you, Mister George

  2. We have been following Bodie through our sweet granddaughter Chelsea Marble.
    What a precious little man Bodie is and so lucky to have such a dedicated Mom & Dad. The "biiiiiiig poop" info to Dad was priceless. So glad Chelsea had a chance to visit Bodie. It sure made her day and re-assured her. Love from Chelsea's Papa & Grammmie
    Best wishes and much hope to your beautiful family
    Ralph & Gloria D.