1/28 7:15 pm

Ethan was so tired this morning. Likely because of his big day yesterday. He was immediately put on spontaneous breathing until about 10:45 am. This was to exercise his lungs. 

PT/OT came right at 8:30 am. They were ready with a Lincoln Park play list. His PT shared he used to have long hair and headband to Metallica.  With the motivating soundtrack pumping through the room, they sat Ethan up. They had Ethan sit for several minutes. He is skin and bones so he gets very sore from sitting too long.  He has protective bandages over his protruding bones to help lessen the pressure bruising.  Even with his Rolls Royce Air Bed, he still has bruising.

He had minimal help while sitting. Then, with his sound track bass pounding through the room, he stood more squared off and straight than yesterday and for the longest time yet. He and his 3 medical staff members were bopping their heads along with the music.  He then sat down for a few minutes. Everyone in the room was commenting on how cool his room was and it was by far the coolest room on the floor. They also shared it was because of the people in it, which I agree. 

It was really hard for him but he stood up a second time. The music was thumping. This time it was for a shorter time but he did it. More cheers and clapping. He then needed to rest. He laid back down and did some hardcore napping until his procedure.

Ethan’s nurse scurried all over the room trying to prepare him for travel. She moved his IV pumps. We have 7 pumps currently. It was still chaotic even though he didn’t have the chest tubes and 19 pumps that he did have. 

Ethan had his IV lines changed out today’s s well as true pumps. This means a new pole, new lines and organization. He is getting extra IV nutrition to give him some healing power. IV nutrition accounts for 2 pumps and his oral feeds account for one pump. He is down to 4 medication pumps and 3 nutrition pumps. Woo hoo!!!!!

More weans were done to the vent. Inch by inch they are coming down to a place of being extubated. Talk is Tuesday or Wednesday. Ethan wrote down “I want to get my tubes out.” Understandable. I also would like them out. 

I can’t wait for the glorious moment when I hear his voice. We won’t have to communicate with writing. Even with the writing, sometimes he falls asleep while writing and I have trouble deciphering what he is trying to say. Sometimes I just start handing him stuff and saying the name of it with an upward inflection. Blanket? Pillow? Dirty socks? He never picks dirty socks no matter how many times I offer. It was discussed that a solid plan for next week, as long as things go well, will be to extubate him. The holder that is stuck to his face is pulling his beard hair constantly. It hurts him. He will be glad to kick it to the curb. His throat is also so sore.

Ethan had another lasix challenge. This was to see how his unikidney (the official term is solitary kidney) does at making urine off dialysis.  Within about 20 minutes he peed as small amount. We all cheered like he peed gold nuggets. Nothing like cheering a teen for urine output. This poor kid is still on heavy duty opioids and narcotics. 

When the trial was over, they hooked Janice up to her new location, Ethan’s right shoulder. To hook her up she had to be relocated. Stupid Janice. Are you kidding me? This is a joke right? This, this is Karma at it’s finest. She is arms length away ready to do her beeping in my ear. Ugh! She better keep her yap flap shut tonight. This is payback for all the rotten names I called her. This is why you should be kind. My face did not have a pleasant look or any look that would be considered even a little pleasant on my face when I saw it.  I also said all of George Carlin’s 7 dirty words in my head.

Thankfully Ethan’s favorite show, The Office, is still on cable. We are still watching all the episodes as they play. I see new things each time.  I think the intro lulls Ethan to sleep like a favorite blanket, it’s comforting.

Ethan has graduated to wearing real human clothes and not hospital provided attire (which he hated and didn’t really wear anyway). This is a big deal. He was also provided a urinal finally. Have you ever tried to work a urinal while on sedatives? On sedatives, physics isn’t generally in the forefront of your brain so there was a bit of a learning curve.

Since Ethan was in a Lasix challenge, his blood wasn’t beint cooked outside of his body. Now he is warm. Very warm. We have two fans running to cool him off which is more like the Ethan I know.

We had a lot of  progress today. Ethan is sitting up taller in the bed. He has less tethering him down. His procedure to relocate his lines.  The line in his groin was a 12 gauge.  How would you like this inserted in your groin?

Ethan had a good day today. He looks so much better today than he did yesterday. It is crazy how much progress can happen in one week. Wow!

For some reason xRay has decided to come at 5 am. So I am going to bed early. I am tired.  Here are some sunny pictures of the city.

I have my PJ’s on and ready to shut my eyes.