12/23 7:15 pm

All the car pictures Ethan’s car guy, PT buddy gave him.

Today was interesting.  Ethan had the renal team come for a visit. His renal (kidney) values have been creeping up over the past 5 days. They are calling it an acute kidney injury. The doctors have been thoughtful about it and tried to lessen the work load of the kidneys by making small adjustments.  The kidney team came in and let me know that Ethan would now be getting twice a day kidney panels as well as a kidney ultrasound. They briefly touched on dialysis and that it could be something we need to do. My brain is telling me not to get upset yet though.

The ultrasound lady came in. She had a very thick accent. Pair that with the double masks and I couldn’t understand a word of what she said.  The nurse way trying his best to help but even he was having issues. She was having issues finding his left kidney. At one point she asked me if Ethan had a left kidney or if it had been removed.  Of course this took her asking me several times and me asking her to repeat herself. Luckily she was patient with me.  As far as I know he has two kidneys until they tell me otherwise. That question seemed a little concerning. I think they weren’t sure if he was missing one or he had one but in a different location that they didn’t find. Also he had a lot of fluid which made things difficult to see as well (hence the kidneys aren’t working like they should to remove it) I am sure I will learn more as time goes on. We will circle back to that later.

Ethan’s X-ray still showed mucky lungs. They are suctioning his tube every 2 hours round the clock. He is getting multiple inhaled as well as oral medications for mucky lungs. 

The laundry facility at the hospital is “out of order” due to the Norovirus outbreak on that floor.  Well I don’t want that nor do I want to give it to Ethan. I had to cart all the laundry back to the apartment to wash it. I was away from the hospital all afternoon and it caused me anxiety. Did they take his boots off at 3:00? Is he turning every 2 hours, are all his joints supported? Are they washing his face? Who am I missing that is stopping by the room that I am missing? 

This morning I spoke with a few different teams. One was in particular was the psych team. I told them the most anxiety I feel, is walking to the bathroom.  What condition am I going to find it in? I then showed the two doctors multiple pictures of the bathroom. They probably are secretly trying to figure out how they can slip something into my drink because I have a public bathroom hang up.  Everyone has seen the pictures, it’s gross.

Then the social worker stopped by. I also told her about it and showed her the pictures.  I also mentioned it to the person sitting at the main floor desk.  I asked them to bring the cleaning supplies to my room and I would be happy to clean it. So hopefully that will be checked more frequently. But I still go back to human nature and other parents acting like animals.

When I got back to the hospital (clothes are still wet because the washer dryer at the apartment isn’t that coming I bust) I got the report that they have switched paralytic drugs today. They have chosen one that is a bit more liver and kidney friendly. Also, his kidney values have improved already.

He did require a bit more extra sedation today throughout the day. They were able to wean off a medication. He has 16 pumps, 3 of them are feeds. They are transitioning back to oral feeds and weaning down on the IV feeds. That will also help ease the load of his kidneys.

His fever is now up to 103.4. All the cultures were taken. Not sure why he has this cyclic fever. He is going on a cooling pad.

Ethan’s car buddy PT guy came and worked with him today. He is such a nice guy. I had this high performance show on for enrichment for Ethan and his car buddy PT guy was giving me the blow by blow of what was going on. There was so much excitement in his voice. He showed me pictures of his car. It was the black kind and sporty-ish (cars are just not my thing). Car buddy PT guy came back later with tons of pictures he found online and printed off for Ethan!  Wow!

I hung the pictures all over so that when Ethan’s wakes up, he will see all the cool pictures. At least that is the hope. He has to heal his eyes a little more. Ethan is going to be pumped.

My Uber driver asked me if I liked Christmas lights when I came back to the hospital. I said yes and told him how our family drives around every year to look at them but I hadn’t done it this year. He took me down a few roads that were residential and pointed out some of his favorite windows to look at. He went down a couple roads he didn’t need to. He didn’t have to do that and I thought it was really nice. He got a tip for his great tour of lights.

He showed me some kindness today. I really appreciated that. I was feeling a little bit like a schmuck because I had not paid it forward today. Then I remembered that I bought Ethan’s nurse a coffee this morning. I also held the door for a couple of people and I helped some lady who dropped her kids glove. I picked it up and gave it to her as she scurried away. It would have been lost otherwise. So my day has been busy yet complete. One more day of healing closer to leaving.