3/17 ☘️

No food after midnight is the worst. Especially when you have left over ribs to eat. Ethan is not worried about his surgery today, he is focused on eating his left overs. This is a sign to me that each day he is getting better and better.

Dialysis was here setting up before 7:00 am. It’s so weird to wake up with a strange man in your room. The morning breath in the mask is always so fun. Good morning I say as I almost pass out from my own filth. Ugh! 

Ethan started dialysis around 8. During rounds at 9:30, his nurse got a text that transport was coming for him at 10:00. I interrupted rounds with my knee jerk reaction. It just burst right out of me. 

I said to the nurse “text them back and make sure they aren’t going to park him somewhere for a while before his surgery. Tell them he is getting dialysis and needs as much of his blood cleaned as possible. Also tell them they can’t come and get him until I sign the consent form.” Then I realized how bossy I sounded. I looked at everyone and said “I am a Leo. Sometimes I am bossy.”

No one argued with my requests. The dialysis nurse also heard what was going on. She was confused and asked if she should stop his dialysis. Before anyone had a chance to answer I said “no, continue with dialysis until I sign the consent form.” It must have sounded pretty convincing because again, no one out of the 12-15 people there questioned it.

We then moved right along in rounds. We have a plan for the day. 

I mentioned to Ethan that he would have all his ounces left to drink this afternoon. I will order him a smoothie.

I have a couple meetings scheduled for when he is in surgery just to get my ducks in a row. It’s a busy day. The nice thing about a busy day is that it goes fast.

They took Ethan down around noon and I went with him. They took him for surgery around 1:00 and said it would take about 3 hours. I made sure everyone knew to call me when he was done so I could be in the recovery room when he gets there. 

I also advocated for a propofol drip instead of precedex for anesthesia/sedation. Propofol is easy to control and fast acting so if there were any issue, they could shut it off quickly. It plays nice with the kidneys as well. I also pointed out that he was on precedex for many weeks requiring a wean as well as withdrawl medication and one could argue he may have a tolerance to it. I might be over bearing but I need to feel good about it too right? He will also get a local block.

4:00 came and went. No big deal. 5:00 cam and went. Ok a little bit concerning but still not bad. 6:00 came and went. Ok. I am concerned. I have been keeping busy with tightening up loose ends here as well as self education on this entire process moving forward and trying to come up with a mental and physical plan for when we return to life at home. We will need to establish a schedule and get Ethan trained on self medicating. Some of that process has already started.

I finally got the call around 7 pm that things went well and Ethan was in the OR. As I made my way to the OR, I ran into his surgeon. We chatted for a bit. I wasn’t supposed to run into him but when you live at the hospital for so long, you find the back way to get to your kid. He was likely trying to make a quick exit. Ha! So I made him talk to me for a minute. He would also be the one doing the kidney transplant on us provided I am a match. 

Ethan looked puffy. They said his head was lowered for the procedure and I think all his extra fluid that he wasn’t turning into itinerary pooled in his face. He was zonked but still focused on getting his smoothie. I wouldn’t expect anything less.

Ethan remembers getting the block. He said it hurt. He also remembers talking to them. They added some ketamine and fentanyl for good measure. 

He got back to his room about 8:45pm. We ordered him a smoothie. He is enjoying some ice water and waiting on his smoothie. He says his arm is sore but not that bad. I can see the spots they used to give the nerve block. I am glad to have him back in the room.