Wow, today has been a trial for me in itself. Skyler went down to surgery early this morning. Those two hours of waiting were pure heck (I dont think I should say the real word, but you all know what I mean) and seeing him for the first time being wheeled back in the room put me into shock and I totally broke down right there in the hall. He just looked so different. He was super puffy, his stomach was a really weird shape from laying in different positions on the table, and being intubated just makes him look different.
The surgery went ok. They replaced his dialysis catheter and put a new central line in behind his knee. They took a sample of the little ball from his leg to biopsy, did a bone marrow aspirate, and put an arterial line in (a line that goes into an artery that reads his blood pressure constantly) He came back to the PICU to recover and then was supposed to go down and get an MRI but he was too unstable. It was really hard to ventilate him down in the operating room and he was on pretty high settings on the vent when he came back, so they decided to give him a day to recover and see how he is doing tomorrow. His blood pressure also dropped pretty low so they had to pump him full of fluid (I know that doesnt make sense when they are trying to get fluid off of him, but he didnt have enough fluid in the vessels it had leaked into his tissues) and started him on a blood pressure medication to bring his pressures up. After a couple of hours they were able to stabilized his blood pressure and started him on continuous dialysis and are slowly starting to take the fluid off. He again is surrounded by machines that are helping keep him alive. I hate that! Up on the floor he was down to one pump on his IV pole and now it is covered again. Hopefully it doesnt take too long before we can start to eliminate some of these.
The last time he was intubated they had him completely sedated, this time he is just on a little Fentanyl drip and he is still pretty with it. He opens his eyes sometimes when I talk to him and nods or shakes his head when I ask him questions. He even mouthed that he loved me. Even through all this crap that he is going through, he lets me know that he loves me. Wow, I just cant put into words how much I love this boy. He is amazing in every way possible and I am SO lucky to be able to call him mine!