1/30 7:35 pm

I was first to the shower. Perfect way to start the day.

Our day nurse brought me a glorious coffee. In this drink exchange, I shared with her a sparkling water. Not nearly as exciting, but sharing is caring. 

My RT buddy is MIA. I am going to have to give him shit the next time I see him. I am going to need a written schedule of his days off so I can mentally prepare. 

Ethan had a quiet evening with some visits from all of his nurses to say “hi” and to see how he is doing. I was reflecting on how relieved I am that Ethan has started to communicate how he is feeling. Our visible scars can heal, but mental scars can be long lasting. We need to heal and cope with all the scars.

Last night Ethan had an interest in hearing about what he has been through. With all the pictures and videos I took, we began looking at the pictures and I was telling him about all he has been through. I think it was helpful for a little bit.  I must have gotten super boring because he fell asleep while I was talking. It could have been all his sedatives.  I think he could have been faking to get me to stop talking. If that is the case, it is brilliant and I will add it to my repertoire of ways to get people to stop talking to me. 

I talked to the nurse about my regret of not telling Ethan he was going to get zapped. It was weighing heavily on my mind yesterday. I was kicking myself. As I talked to her, she was also kicking herself. It just happened so fast.  I then posed the question, would it have been better if he had known it was coming? I am not convinced it would have been. If I had a re-do, would I change what I did? I decided that sometimes ignorance is bliss and maybe it happened just the way it was supposed to.

When I woke up this morning Fox News was on. One channel off from Comedy Central. This would not be something either one of us would watch. I chalked it up to that maybe Ethan accidentally changed the channel. Later in I found out that Comedy Central (which is what Ethan fell asleep watching) had an infomercial at 3 am for dildos. Apparently in the pediatric ICU, this is a frowned upon show. I was dying when I found that out. (No purchases were made by the way.)

Ethan had another echo to see how his heart was handling the lower vent settings and medication weans. I am waiting to hear back.

An emergency happened today with another child on the floor. All of the nurses rushed to the room. It was down around the corner. I have been on the receiving end of this event and it is horrific. 

I closed the door to our room to shut out the emergency broadcast texts that were relentlessly sounding to alert everyone to an all hands on deck emergency.  One nurse stayed behind to tend to the rooms on this side of the CICU.  Our nurse was summoned to help. I told Ethan we were just going to quietly mind our business.

Ethan then needed to have his breathing tube suctioned.  I went to alert someone and there was no one. I looked at him and said “well, we are going to do this together.”  I did what I have seen done a hundred times.  The first pass I made was not at all graceful. The second pass was much more productive.  At the same time Janice started going off saying there was a blood flow problem. Really Janice?  Now?

I was able to trouble shoot the dialysis machine, cleared the error code and was also able to suction Ethan’s mouth to clear a gnarly mucus wad. Phew.  Then Janice started to alarm again that one of her bags was empty. I got the bag out and summoned over a nurse. Can you change this out for me? I mean I should have been put on payroll. 

Our nurse was gone for quite some time. Overhearing the staff talk, the child that had an emergency didn’t survive. Ugh! Someone’s worst nightmare came true today. I saw some of the staff talking quietly, heads hung low. They all put their heart and soul into these kids. If it weren’t for their swift moves on multiple occasions, Ethan wouldn’t be here today.

Ethan is still triggered by the sounds of the monitor. He keeps asking about if his pulse is ok. His nurse and I were also talking about taking out his tube at some point and he expressed that he is terrified. 

I explained to him what is involved. It is really not bad at all, he will have a sore throat and maybe a cough. I think his perfect smile we paid so much for has been altered a bit by his tube. We will fix it. We need to make sure his new heart stays healthy. That means impeccable oral hygiene as well as eliminated pockets, nooks and crannies to collect food.

Ethan had a relatively quiet day. No sitting or standing, just bed OT/PT. This included all parts of the body. He was exercising his lungs all day with a 11 hour spontaneous breathing workout. His vent settings were lower today than yesterday. This is huge! This is a big, big beautiful accomplishment.

Today was a quiet day but there was much success. I am grateful for that. 

Big things are coming our way! I can feel it.