Busting out of the PICU..

So, last night was another "party" night. He slept peacefully for the most part, but every now and then he would just wake up for no reason. He didn't appear to be in pain, but he was just awake. Honestly, I think that he and his body are both a little confused. His entire life, he's done dialysis overnight. Fluid was constantly being pushed into and pulled out of his belly. I think that it may feel weird to him that it's actually not happening now. That, and his body is feeling so much better with a working kidney, that he has lots of energy. That is one of our main problems right now is keeping him still. He is trying to move all over the place, and he still has wires and tubes all over. Not as many as he once had, but still.

So this morning when I woke, he was in a complete tantrum, but for good reason. Overnight the dressing on his central line got loose and the nurses were working to get it back down. Eventually, they decided to change it completely, bathe him, and change his gown and sheets. Once this was all done, he calmed down completely. His labs look great! His creatinine has actually lowered again to 0.1. There is actually NO better number for kidney function, that's the best that you can get, so his super kidney is working above and beyond! The only downside to his labs were that his Potassium and Phosphorous are still low. The doctors are hopeful that this will correct itself once he begins taking formula again. The formula will have these electrolytes in them, so it will help to bring the numbers up naturally. The only major issue we have- and it's not really that major- is leakage from the incision. The entire team-nephrology, surgery, and nurses- believe that it is just fluid draining from his belly. Over the last few days they have given him a lot of IV fluid to jump start the kidney and keep it happy. Yesterday they lowered the fluid some to 1.5 liters, and today they plan to lower it again to 1.2 liters. Hopefully this will help to relieve some of the pressure in his belly, and there will in turn be less drainage. We have also noticed that the drainage coincides with his activity. He has quite a bit more drainage when he is kicking and screaming, or rolling and wiggling. Hence, the reason we are trying to keep him still. The surgeons took a culture of the drainage just to be safe, but everyone is positive that it will come back fine.

The plan for today is to take out his NG tube, which is the line in his nose. It has been working to suction out all of the acid build up in his stomach to prevent any belly issues. They are going to take one more set of labs and then they are going to remove the central line out of his neck. This is really good. While it has been really convenient for pain medicine and lab draws, it's a huge risk for infection. If it is not completely necessary, then I would prefer it come out. The less risk, the better. Once all of those lines are out, all he will have left is one IV line and his Foley catheter. This means that we are being released to the floor this evening!

We really could not have asked for a better recovery. I keep knocking on wood to make sure I'm not jinxing us! Keep up the prayers, because i am absolutely certain that those are the reason we have been so lucky!

His catheter..

The drainage..

His central line..

Trying to give me his NuNu!