Tuesday night was filled with lots of discomfort, fear, and vomit. He continually had to be reminded that I was with him and he would often say, "help mommy please, I hurts". It was heartbreaking and I just cried with him. R didn't tolerate feeds very well so we discontinued them for the night and we restarted them Wednesday morning at a way slower rate. (30 down to 5) about 1600 on Wednesday weoves up to 10.
Wednesday was pretty rough. The fever remained until around 1300. He continued to do Tylenol every 4 hours. R wasn't very much himself at all. He wouldn't laugh, talk, or wiggle. Every time you asked him to move or sit up he would start to cry and say "I lay, blankies please". He refused to eat anything by mouth but tolerated his feeds very well. His heart rate and respirations were still a little high but not as high as Tuesday. On Tuesday he complained about his hand IV and again on Wednesday. I finally have it a good exam myself and quickly realized that it was very swollen, warm to the touch, and caused r much pain. We removed it and later decided to stop all IV medications! That means, no more IV! Woohoo!
He is doing much better today than Tuesday. I pray he continues to improve!
Unable to get weight
Unable to get BP
Wednesday night we continued the Tylenol every 4 hours. R continued to tell our during the night about 3 hours post Tylenol administration. He is very sore where this new button is and he is afraid to move. R refuses to eat or drink anything other than the occasional nursing session. He did take a bath today and sit up in the tub. He sat in there for almost an hour. He didn't really move but he enjoyed sitting under we the spout and letting the water run over him. His new button looks awesome and isn't red at all. It is still draining some which is totally normal
We have upped hisntube feeds from 10-15-20. He is tolerating them very well. Our end goal is 50 CC per hour over a ten hour period. We are at 20cc per hour for 24 hours. R is enjoying playing his tablet and watching Peppa pig. He is not enjoying much movement or getting his tubie messed with. He does help with administering medication through it though. He loves being free from his IV, today has been so much better. I don't believe that he is in much pain but rather is afraid that he will be.
We are off all IV meds and doing cefdinir by mouth or tubie.
R still hides from all the nurses when they enter the room and they love him.
We are doing great and expect to go home at the beginning of next week!
Thanks for all the love and prayers!