Today started out really rough and Bodie hit his lowest point so far. BUT we had some amazing visitors who brought so much fun to today that it ended up being a pretty good day after all! I continue to be so amazed by how fast he is progressing and how great he looks for being just a little over 48 hours post open-heart surgery!
Last night, after the Morphine from his chest tube removal finally wore off, he was bright eyed and bushy tailed. I heard him moving around and got up to find him sitting up in bed staring at me. I asked him what he wanted and he said "Water. And to do crafts." Um, come again? Crafts? Awesome that the morphine is out of your system and you're awake, but dude, it's 3:45AM!!! So yes, we did an impromptu craft session at 3:45am. His attention span lasted all of about 10 minutes before he fell back asleep. I wasn't so lucky. Thanks, dude. But nonetheless, it was awesome to see him be excited about something!
This morning started out pretty rocky by contrast, with Bodie having a good sobfest about wanting to just "go home." Heartbreaking. :-( Then, it seemed like he was in pain so we gave him some Tylenol. CHLA has been awesome about giving us all of his oral meds in pill form (since he swallows pills), but the Tylenol was in liquid suspension and he was MAD about having to take it. He screamed and fussed and finally passed out once it was in his system, but not before making his pacemaker go awry again (his squirming and kicking inadvertently kicked one of the pacemaker lead connections to the box loose). Which bought him 2 more days with his Arterial line. UGH. They were ready to pull his Art line, which is in his femoral artery (his groin area), but since the Art line gives more accurate reading of the heartrate and they have now decided the pacemaker isn't 100% reliable, they aren't comfortable getting rid of that Art line until after Monday's surgery.
I get it, but still a bitter pill to swallow, because it is hecka hard to walk with a femoral line in, and they won't let Bodie walk anywhere with it (he has to stay connected to the main monitor at all times). So they compromised with me and agreed to keep the Art line in, but let him walk around his room a bit over the next 2 days. As it turns out, I didn't need to worry so much. The poor kid was SO excited to get to walk across the room, made it 2 steps and his little legs collapsed. He just started crying about how he couldn't do it. I felt so bad for him. Hopefully, we'll get to try again tomorrow.
But we did have some good, forward progress today for sure! At rounds this morning, they mentioned that his chest x-ray looked a little hazier than the day before. Given that his sats were variable overnight again, they increased his Lasix to try to combat both concerns. So far today, his sats were much more stable (and his 02 is now down to 1/2 Liter); we're praying the chest x-ray looks better tomorrow as well.
Bodie also ate and drank more today! And he's sitting up more and more on his own, which is great to get the fluid moving. Yay! Although it's clear that he's still in a fair amount of pain, he is definitely having more and more happy moments, thankfully!
The biggest highlight of our day today was 3 different sets of visitors, all of whom took our mind off of being stuck in the hospital - and got us LAUGHING! We had fellow heart mom, Jennifer and her hubby swing by - they brought presents for Bodie and he actually jolted upright in his bed as soon as they walked in, just because he saw their present and wanted to open it! Ha!
Bodie also had a VERY special visitor, who apparently provided the best medicine for healing - Sierra (along with Grandma Jan & Popo Alan)!!!
As it turned out, so was he...
For the FIRST time in his life, Bodie's lips are the same color as Sierra's! (The pic on the top was just taken a few months ago - Bodie was SO purple!)
Me and my best girl
Finally, our fellow heart mom Michelle and heart friend Brenda stopped by to ooh and ahh over Bodie's newfound awesome pinkness. Michelle brought Bodie watermelon which he went to town over, presents for Dusk and I, and toys for Bodie that Michelle, Brenda and I had a ton of fun playing with!
Bodie with Michelle:
Thank you SO MUCH to those of you who came to visit today. I cannot tell you what a boost it gave to Bodie and I, especially since today started out so rough. What a blessing it is to have each of you in our lives!
For tomorrow, please just pray for continued forward progress, that Bodie maintains the 02 sats they want and that we can get him to move more, eat more and poop!