4 Oct Pics

Update!

Had a great appointment with Dr. Marx this morning. Coley is doing SO well that they don't need to see him for 6 months! Crazy! His O2 sats are 96%! His lungs are clear and there's no sign of an enlarged liver. They cut his dose of diuretic (lasix) in half. That is GREAT, because it was really interfering with sleep at night (he was waking up to pee several times). Now we only have to give it once a day. Yay!

Have a great weekend!!

Coley Jammin'

Back to school!

Coley is allowed to go back to school! I'm supposed to stay with him to help avoid any impact to his chest (trips, falls, balls, etc). I'm happy to be here and so is he!! The Apple Orchard School is a remarkable place. I can't explain everything that makes AO so special in this short blog post (published from my iPhone!). But in short, the kids are just allowed to be kids. They have just the right amount of freedom and structure. They explore and have adventures outside in all weather. And they're gently prompted when needed to be good citizens.

I'll take more pictures throughout the day and write more later about how it goes. He's happily playing with oobleck right now!

Post-op visit

Great post-op visit this morning. His x-ray showed nice dry lungs! Woo hoo! His liver and belly are still a little big, basically meaning the blood is getting backed up in his organs because the tube now connected to his IVC (veinous return from lower body) is smaller than where it was going before (right atrium, I think). His O2 sats are at 93! They think because the sats are so high and the belly is still a bit enlarged, the fenestration they put in the gortex tube connecting his IVC to pulmonary artery may be closing. It was smaller than most to start with, however (under 2mm instead of closer to 3-4pm), so it's possible that's the reason.

Long story short, he's doing great. We're at the aquarium now, so I can update more later!

Coley's been home seven days now. We're trying to get him in walking shape and back to his old sleeping routines, but with little luck. When it comes to walking, he wants "UPPY." When it comes to sleep, he wants "MOMMY!" But being stressed about sleep or work is a blessing after being stressed about Coley's special heart for so long.

More walk and more sleep would be nice for all involved, but we're so happy to have our dear son home and back to his cute and silly ways. Someday sleep will return, we hope, but for now we're counting our blessings and enjoying time together. We have a check-up tomorrow with Dr. Marx to see if Coley can start up school this week.

Here's a pic of our big boy helping rake for the first time yesterday. It's interesting how with much more oxygen in his blood, his cheeks aren't as rosy as they always used to be. Maybe that cheekiness is just spreading out more?

Here's a great old video of Coley when he'd use the word "Ung-aaa" to mean about a dozen different things. Can you figure them out?

Coley's HOME!

Anna and Coley got home at 4PM today!!