Since Noah's latest heart surgery, he has been on a sedation drug that he has not been on in over a year. The last time he was on this med, he had an adverse reaction to it. We told them that this med is not doing any good for him at all, but they were sure we were wrong. Last night was the worst. I had the doctor paged more 5 times within a couple hours to tell them this drug is making him worse. She kept telling me that she wanted his temp and heart rate to come down before they shut it off. Noah has not slept in 3 or more days. Last night he was crying tears he was so miserable. Finally I had had way more than enough and I told his nurse that I felt like I was going to explode if the doctor told me no one more time... so she went to find her but she was no where in sight so the nurse talked to the fellow. The follow comes in and I told him that I want it turned off and he said, "I agree, we are just going to turn it off. This isn't doing anything good for him." THANK YOU! And I will say, within 2 MINUTES Noah was calm and his crying had stopped! I wanted to tell the doctor that I told her so! I have yet to see her in the halls. I wonder if she will ever apologize for not listening. Anyway...

Since we have stopped Noah's feeds, his pancreatic enzymes have trended down. We are waiting on a set of labs before we try feeding him or get an MRI.
His white blood cell count is still going up and his fever curve is still high. He is on a couple antibiotics to get rid of the infection.
As far as respiratory, we have restarted his 3 one hour trials of CPAP support through the ventilator. Hopefully his airway will get stronger and we can finally plan of extubating him. I can't wait to hear his voice again. Yesterday, a friend of ours, who is also here with her one of her kids, stopped by our room to chat. She had her little boy with her and he is a month younger than Noah. She was playing with him and all of the sudden I heard him giggle. It was awesome because as soon as he giggled, my body felt like a jolt of electricity or something similar started in my heart and radiated out to my fingers and toes. It has been a while since I have hear a laughter like that. It gave me hope and made my heart warm up a bit. Something I REALLY needed yesterday! So, thank you Finn!

Right now, Noah is getting a bath. He is really relaxed and calm. It is a breath of fresh air to get a break from the misery we were all in.