❤️ 1/16 5:20 pm

After my post this morning, Ethan’s night nurse came in and told me about a turn that she did with Ethan last night. She said that she went to turn him and his face crumpled up so sad. She asked him if he was in pain.  He shook his head no. Eyes squeezed shut and a pained look on his face. She asked him if he was scared and he shook his head yes. She told him what was happening and how well he is doing and that he shouldn’t be scared because he has a lot of great people supporting him. He then reached up toward her. She asked him if he wanted a hug. He shook his head yes. She gingerly gave him a hug and then she said she just started to cry. She stood and held his hand until he fell asleep. I thought that was such a gift moment for her because she has put so much work into him.

This morning was full of meeting with the renal doctor, doing PT/OT and having respiratory therapy come in. My RT drink buddy has Ethan today so we also like to shoot the shit.  Today’s topic of discussion: The cultural differences within the Orthodox Jewish community. We had briefly touched on this in a previous conversation and I had to learn more. I did some extensive reading to educate myself to have a thoughtful discussion about it. The conversation gradually led to alcohol and then to horror movies, a natural progression for sure.

Ethan is scared. He thinks something is terribly wrong. We reassure him that he had complications but is now doing really well. At rounds today it was brought up. He is not coherent enough to yet, but the team is shooting to have Psych stop by on Tuesday to talk to him. They are hoping he will have less sedatives on board and they will be able to at least try to communicate with him. I can’t wait for the stupid breathing tube to come out, yet I am also scared for that day.

I discussed what else I could be doing. She reassured me that will all the medications and blurry ointment eyes, he has every right to be afraid. She also said that they have seen kids as sick as he is make a full recovery which was good to hear, however, anything less wasn’t even on my horizon.

Every 1-2 hours Ethan is turned. During one of his turns, he was helping by holding onto the bed railing with his hand so one of the nurses could scoot a pillow under his hips and shoulders. The other nurse was helping him turn and holding him. He ended up letting go of the bed and slowly putting his arm around her neck to hug her. She just cried tears of happiness. She thanked him over and over.

The other nurse was quite jealous. She was giving Ethan a hard time for hugging the one nurse and not her. She went around and asked him if she could have a hug and he put his arm around her neck too. We were all so happy. His movements are frail and jolted. He moves almost in slow motion and sometimes he doesn’t have much  control over where his arms go.

I also gave him the stuffed dog his nurse gave him for Christmas. He hugged it close today. It’s soft. 

His lungs aren’t putting out nearly as much as they were. He also has been on long term antibiotics.  They stop the 18 th. I am hoping he doesn’t regress.

I put in a request for PT/OT to come by daily because I don’t think I am stretching his neck and shoulders as good as it could be done.  I can do the arms and legs but the neck and shoulders are so hard. I have been putting hot packs on the to help loosen up the muscles.

All in all today has been a quiet day of progress. We are down to 9 pumps and Ethans vent settings have been slowly weaned. Success!