Feeling sad for my boy

Today M was so funny and sweet. Smiling and playing. Working hard to stand and walk in the playroom. He really enjoyed playing with his cousins, aunts and uncle (who had to go back home today - triple sad face.)  He was up all day but crashed in his stroller around 4:30. He was so cold and asked for more blankets - so unlike him. His feet are freezing again (they were so warm after surgery) and when I lay down beside him to keep him warm I could hear him grunt with every shallow breath. I called the nurse in and she said he's in pain. He's reacted to every big pain med so when they suggested Oxycodone I really didn't want to do it. I agreed to let them try 1/2 the dose earlier today and it didn't knock him flat or make him try to remove the skin from his face with his fingernails like the others did. To compound everything he vomited up his 3 o'clock dose of Tylenol. He played and played until he fell asleep. No naps today like he did all day yesterday but the grunting and shallow breathing have me afraid - is it the fluid, is it pain? So I asked for a higher dose. His heart rate isn't dropping lower than 118 in his sleep so that can be a real sign of pain. Tomorrow morning after his X-ray we will find out if he needs to go back in the OR to have another chest tube placed. In the back of my mind I am worrying that it's lymph caused by his extra lymphatics, that we've done the wrong thing getting this surgery and not pushing instead for transplant.

He just got another dose of the Oxy. He was so uncomfortable and I feel so overwhelmingly sad bc if i had just let them dose him like they pushed I could have spared him this pain. I pray this med  is the answer and doesn't hurt him, only helps him overcome the pain so he's not afraid to take deep breaths. He is so brave. I also have to step back and look at the big picture and tell myself it is going so much better than I imagined, so much better. 

And after my good ugly cry I am going to eat one of these delicious chocolate truffles made by a wonderful woman we met 3 years ago right here at CHOP. 

** update- he may be having a reaction to the Oxy. When he partially woke up he started itching his face and neck. And now, dead asleep his heart rate is still 118-122 😕 

** update 2. I and Macsen are both sound asleep. He is doing much better numbers-wise -- finally! Heart rate around 100 and our new oxygen saturation best-avg, upper 80s/low 90s. Huzzah! Thank you prayer warriors!