Day 4- surgery

I know that many of you have been on pins and needles waiting to hear how Parker is doing and what decision was made. I will be bluntly honest with you, I would have posted hours ago, but this morning was probably one of the worst experiences we have had since we've been here and it took it's toll on me. I worked myself into exhaustion and I just woke up.

The morning started off great. We went up to see him and Dr. Lunyong was already at his bedside ready to tell us all of the good news. His sodium had gone up from 126-133, which they were very pleased with. His liver enzymes, which have been elevated, finally came down to normal. His creatinine had come down again, instead of going up. His BUN only went up by a point. He had a tad bit more urine in his tube. Everything was so good! According to all of this information, Parker actually seems to be maintaining his kidney function on his own, even though his poor kidneys are so big.

At this point they told us that they would be preparing to bring him downstairs for his two tests. Because he would be being transported, had tests in two different locations, and would be moved around and upset so much they gave him two medicines to keep him calm. The problem with this is that both of these medicines have a side affect of lowering his oxygen. Some people apparently tolerate them together very well. My son, however, does not. While we were at his bedside we witnessed one of the worst things a parent can ever imagine. His oxygen levels began dropping quickly. This has happened before, but usually if they change the settings for his vent, the levels will come right back up. This time was different. His oxygen levels were dropping fast and they weren't coming back up. His oxygen levels started in the eighties and by the time they started to stabilize him they were in the thirties. The doctor ended up having to use the bag to manually get him oxygen and stabilize him fast enough.  Just imagine standing next to your child, watching them struggle to breath, and being helpless. You are not able to do anything about it. It was absolutely horrible!

They finally had him stabilized long enough for him to go downstairs and have his tests. About two hours later they called us and let us know he was back upstairs in the NICU and tolerated the tests very well. We immediately went upstairs to meet with the doctors to hear the results. It seems as though the doctors are convinced there is some function to both kidneys. We don't have the official report back to know exactly what that function is, but they have decided to leave both kidneys in at this point. They did see the bladder and there was a small amount of urine in it, so that is a very good sign.

So today around 4:00 they did surgery. They left both kidneys in him and placed a peritoneal dialysis catheter in his belly. Parker will eventually need dialysis.  It is inevitable, but it is not something that he needs to be started right now. The reason they decided to put the catheter in today, though, is because it takes time to heal. The longer it is in before they have to use it, the less likely it is to leak or cause infection.

The surgeon called at 5:30 to let us know that he was out of surgery and that he tolerated everything very well. Maybe even better than they expected. The surgery was done at his bedside in the NICU so they did not have to transport him or move him around, which was very nice. He also said that once all of the medicine and anesthesia wore off, they expected his oxygen to return to higher levels. At this point, we are waiting for the nurses to call and let us know that we can go up and see him. He will be resting and recovering for the remainder of the night, so we will not be staying too long. He needs to gain some of his strength back and so do we.

Please say extra prayers for him tonight when you can. He needs each and every one of them. Thanks!