There's a song I used for Bodie's 2nd birthday video, called "Amazing." The lyrics kept running through my mind last night as I was watching our precious little dude:
You're so amazing
You shine like the stars
You're so amazing
The beauty you are
You came blazing
Right into my heart
You're so amazing.
Because seriously, this kid is AMAZING. Everyone has been stunned by his progress so far. Nurses and doctors who remember him as an infant running into every complication in the book just come in shaking their heads in disbelief that he is powering through this Fontan recovery. In fact, when he came back from the OR, he was put in a room in front of the nurse's station. As a seasoned heart mom, I knew exactly what that meant - that he was a more critical case and they expected him to throw them a curve ball or two. But he hasn't! In fact, at 6am this morning, they moved us to a room farther away, because he didn't need to be so close to the nurse's station!
He was extubated last night at 9:30 or so and immediately said "what about the milk???" Ha - little stinker has a great memory, even sedated. :-) We weren't able to give him any liquids for 4 hours post extubation, but once that time passed, we gave him water and he hasn't looked back. He's been guzzling water and apple juice, and eating popcicles left and right with no issues, thankfully. He is on a fluid restriction as his body adjusts to the new circulation (approximately 80% of typical intake), so we'll have to get more creative later today with how we manage that. Lots of watermelon (which doesn't count toward his intake), I imagine!
Since being extubated, he has been holding his own, satting pretty consistently in the 90's. He's still on 3.5L of oxygen, so I'm expecting his sats to drop down as we wean that (because his Fontan is fenestrated, we expect his sats to run on the lower side), but they're comfortable as long as he stays 85 or so and above.
He's been fairly restless, waking every 20-30 minutes, asking for water. Our night nurse was fantastic and let me lie in bed with him, which seemed to help with the restlessness. We're also diffusing Lavender, Balance and Citrus Bliss (both for reducing anxiety) oils in his room. His nurses have been great about accommodating that - and everyone keeps commenting on how nice our room smells. :-) We increased his Morphine a bit to help him get more comfortable and he seems to be resting better now, thankfully.
They just finished with morning rounds, and it sounds like our plan for today will be to pull his Foley catheter, his ART line, separate his chest tubes and maybe pull one (one of his tubes is producing a fair amount of fluid but the other one isn't at all), get him up and walking and start him on solid foods. A big plan, but he seems to be ready for big things! We'll let his body decide how much it can handle.
Please continue to pray that:
1. He is able to get up and moving without too much pain.
2. He is able to transition to solid foods without too many of the belly issues generally accompanying the Fontan.
3. We're able to manage his pain effectively.
4. His fluid doesn't increase significantly.
5. His foot, where the infiltrated line was, continues to heal.