One step forward....two steps back

Yesterday I posted about how well Lucas was doing and how he was playing and being Lucas again. Well, today he did the opposite! He had been fussy this morning and super pukey- he puked at least 3 times before noon and it was just nasty, green, stomach juices only puke. Each time he would puke, they would turn his feeding machine off for half an hour to let him rest and seemed to do really well during those half hour periods. They would turn it back on and he would puke again shortly after that so they turned his feeds- which had been at 30 ml/hr- down to 10 ml/hr to see if that would help.
He didn't puke anymore after that but was still so incredibly fussy. We gave him tylenol with codene and even morphine but neither of those phased him. It got so bad that after 3+ hours of nonstop crying and writing in pain, I had to leave. I couldn't sit there and watch my baby hurt that much and be able to do nothing about it. I had a breakdown and then started to feel a little better, but I still couldn't go into his room because he was still crying. They finally agreed to just turn the feeding pump off for overnight to give his bowels a break- after all, he was getting more food through there a day then he was taking by mouth before he even had surgery. His cardiologist and the surgeon both agreed that the dieticians were feeding him way too much through the pump- they had just wanted it in to boost what he ate a day, and to ensure he got enough formula to stay hydrated and gain weight at a good level.Our goal going in was to just do feeds overnght, but the dieticians were insistant on getting him to full feeds through the pump and doing them all day long. His little body can't handle all of that. Now that those two are aware of what has been going on, I think it's about to change for the better. Dr. Engum told us to expect several more days here as we figure out a good balance with his feeds. He would rather we stayed a few extra days as opposed to going home on eggshells--we are both A-OK with that!
He was also constipated today and was trying his hardest to resolve that issue which caused him a lot of pain as well. He finally started the process of going shortly before we left for the evening. And to make the day all better, I wen to change his second poopy diaper and realized his leg was a tad swollen. When the nurses took the cast off it, it was so big they could barely cut his name band off. His IV had gone bad :( but by this point he was just so exhausted he laid in the bed all lifeless and just looked around as people were doing things.
When we left for the evening, he was snuggled up with granny and his heating pack snoozing away. I hope tomorrow is a better day <3

Day 3, Day Nurse= awesome, Night Nurse= I presume is awesome- I've never met her before tonight, Pain/other Issues= FAIL! ...but at least we came out at the end of the day and he was still in his room and had to have nothing more then a new IV put in <3