Tuesday, August 20, 2013

Fontan Post Op Day 5: Turn that frown upside down

Whew. What a day. 

It started with a morning snuggle and watching Cars and "breakfast" (don't judge - it's totally within the CHLA "low-fat diet" protocol). 

After that, it was lots of progress!!! Which made me VERY happy. I wish I could say Bodie shared my excitement. But, apparently, the painfulness of the actual procedures to remove his Arterial line (in his groin), his temporary pacemaker wires and a chest tube outweighed the awesomeness in progressing forward. He got some Morphine beforehand, but he is one dramatic little guy and let us know how unhappy he was. :-( 

We were met with lots of unhappiness and avoiding eye contact today. This kid was totally checked out. :-( We had to bring in the big guns, in the form of a scarf juggling Faith Spelbrig.
...who Bodie was thoroughly unimpressed with.
She was able to bribe him with a few ice chips... 
 ...to finally get a split second smile.
But, Bodie was one tough audience today. It was pretty exhausting trying to keep him engaged. 

I knew he needed a change of pace, so we tried to get him up and walking in the late morning. But he was too tired from the battle over losing his Art line to make it more than 2 steps without sagging and sobbing that he just couldn't do it. But after a nap, we decided to work with what he was giving us and take a wagon ride around the CTICU and CV Acute. As you can see, it was exactly what he needed!
Could you just die from the cuteness of this face???

 We also used the wagon ride as an encouragement for him to walk. We had him walk 5 steps to get from his bed into the wagon, 5 steps from the wagon to the 2 windows he wanted to look out (and 5 steps back each time), and then 15 steps from the door of his room to his bed. Not running yet, but seriously, BIG HUGE OLE HUNKING PROGRESS, peeps. 

Working on standing while looking out the window.
The plan for tomorrow is to lose his other chest tube (assuming the tiny effusion that showed up on this morning's x-ray is gone), lose his IJ line, walk walk walk and move to step-down! We are definitely on the forward progress train at this point! YAY!

Prayers for tonight:
1. Bodie is still on 1L of 02. It's annoying him and we'd really love to ditch it. Please pray we can wean him off of it tomorrow without his sats dropping too low.
2. Pray that his morning x-ray looks great, he continues to put out little fluid, and we can lose that last chest tube.
3. The only reason they kept his IJ line one more day is because he needed a few electrolyte replacements today. Pray that his electrolytes balance out and tomorrow morning's labs look good, so we can get that line out (it is REALLY bothering Bodie).
4. Bodie's uber sensitive skin has really taken a beating from all of the tape and tubes. Please pray we can find the right lotion to bring it back to good shape. Poor kid is all kinds of rashy everywhere.
5. Bodie hasn't pooped since the pacemaker surgery. Please pray for poop!

And I'll leave you with a sweet Bodie-ism. Tonight, as he was in his bed watching Cars 2 with Dusk in the chair next to him, I was sitting on the window bed updating the blog. 

This was our conversation - 
Bodie: MOMMY!!!
Me: Yes Bodie?
Bodie: I'm...missing something.
Me: What are you missing?
Bodie: You!

He wanted me to lie in bed with him. I.love.this.kid.



  1. Oh my goodness!!! I say he totally had a right to pout today, I think I'd be pouting too, especially with an IJ line still in!!! Praying for little Bodie and all those things you mentioned! Love ya friend, and give that little man a hug for me!

  2. Have you tried the lavender EO on his rashes? It worked well for my daughter.

  3. Bodie! You are a rockstar buddy! Way to go little dude! Keep up the good work getting better. A little buddy of mine named Nash has been praying for you! Love ya, Mister George

  4. It's tough when things hurt. Aunt Joanne is hoping that in a few days, all the hurt will be forgotten.

  5. Awe very sweet...prayers for Poop, lotion,. no 02, more walking, high sats and that last chest tube out. XO Debbie and Tyler XO

  6. Hey, here's another "prayer for poop!" Don't laugh Lord!

    So, Bodie, you got to watch Cars? Mater is my favorite guy (er car) in that movie. Lots of love, Mr. George

  7. he's so cute! glad he is making progress!

  8. how sweet! and i love the wagon idea. i'll have to use that next time if Stevie is not too big. hope he feels lots better tomorrow!