We were able to bust out of the PICU Wednesday afternoon, and to a regular room on the floor. Things have been stable, and we were able to get better rest in our new room, thank goodness! Clay started spiking a fever on Thursday and had a pretty crummy day that day. He wasn't tolerating anything on his tummy at all (even stomach juices) so they set the g-tube to drain and that seemed to help alot. He also had more fluid around his lungs so they were closely monitoring that and trying to get his JP chest tube to drain adequately, and taking chest x-rays to make sure his lungs aren't getting too flooded. All these issues are to be expected after a major surgery.
Friday was a much better day - he rested very well overnight and woke up looking much more perky. He even got out of the bed and walked down the hall and did great! He sat up in a chair for a good part of the day, too. As bad as it hurts him to move around, we really need him moving so that he can move fluid out of his tissues, and also help wake up his guts. We were also able to start his g-tube feedings at 20ml/hour continuous feeds, and he's tolerated that okay so far! He's had a couple of pukes after trying to give Tylenol through his g-tube, (about 14ml all at once) so we've had to resort to getting Tylenol rectally. Just another reminder that we've got to go slow with his guts.
Friday evening, he felt like playing a little Fortnite so that was a big pick-me-up! He was able to talk to one of his buddies online, and his voice just sounded a lot stronger than we've heard since surgery, so that was sooooo good to hear.
Overnight, he seemed to have a hard time getting comfortable and wasn't able to rest too well, but in this morning's interactions with me and Daddy, his nurses and doctors - we can definitely tell he's getting some of his sass back :) little man is so funny. His urine output has also been low, despite all the IV fluids he's been getting. His body is obviously retaining most of the fluids because he's looking pretty puffy today. So during rounds today, it was decided to give some Lasix to help him move the fluid, and also some milk of magnesia to help him have a bowel movement. So we'll do that first and then if things go well, we may be able to up his feeds a little! Crossing our fingers and toes he tolerates everything today!
Clay's getting some good pain meds through a PCA pump, and also Toradol and Tylenol every 6 hours, so thankfully his pain is being managed okay. He sure is a trooper - and just the best little patient - not afraid to speak up for what he needs! The nurse and doctors all comment on how mature he is, and he has won over more hearts, per usual.
Even though we had some initial hopes of getting home this weekend, I'm gonna go ahead and say that's not gonna happen. We've still got a ways to go and a lot of meds and oxygen to wean off of. We're okay with hanging out, though. There's no rush and we want to make sure he's good and ready! Our surgeon is pleased with his progress and says Clay's still way ahead of where he thought he'd be at this point!
We are so grateful for everyone's prayers and love and good vibes sent our way.
Y'all have a good weekend, take some deep breaths, and hug your people tight. Peace and Love, dear friends!
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