1\22 8:35 pm

Ethan’s OT came in first thing this morning and said “I made him a sign!”  She whips this awesome and thoughtful sign out. “It’s Perfect!” I said.

I hung the sign up for him to see. When I pointed it out to Ethan, he read it and smiled, then gave a thumbs up.

At rounds today, it was brought up how Ethan sat up yesterday for 4 minutes, apparently an impressive amount of time for the first sit in 8 weeks.

One of the critical care doctors starts telling the story that she walked around the corner and saw a crowd gathered around Ethan’s room. She immediately rushed to his room, knowing that the last time a big crowd was around his room, he had arrested. People were trying to warn her that it was ok but she was “panicking” and wasn’t really listening. As she peaked in the room she squealed “Oh my god! You are sitting”.

She was so surprised!

We all started laughing as most of the people remember the crowd outside our room and what a crap day that was. Yesterday was such a joyous and fun day. Much, much different.

At rounds, it was discussed they would sit him up again today as well as do a spontaneous breathing challenge. He also had a his sedation weaned but not his pain killer because he was showing slight signs of withdrawal again. They are going to give him just a little more time. Likely tomorrow slowly decrease the amount.

Today was a big day for Ethan. He was awake a long time this morning. He practically didn’t even nap at all until 12:30. This morning He started wiggling around in his bed. He was pulling his blanket over his head and then pulling the blanket off his head. Moving his legs, arms just not sitting still. I finally asked him “what on earth are you doing?”  He mouthed “PT”. He was doing his own PT. So we did lots of PT. Shoulders, arms legs hands, neck. We did stretches all for a little over an hour. 

Then his nurse came in and said, “you better take a quick nap because we are going to sit you up again soon.”  He did take a 20 minute nap. He was then woken up by BOTH PT and OT.  One of the nurses whom has been in helping take care of his bed sore was upset she had missed the big event yesterday so she coordinated her schedule to make sure she was going to be around for it.

They prepped Ethan for what to expect again. He was sat up. There was cheering and clapping. Another crowd gathered to cheer Ethan on! Yesterday Ethan sat up for 4 minutes.   Today, Ethan sat up for 5 1/2 minutes. Progress for sure. He was kicking some ass!

Ethan had a nice long nap after than. When he woke up I asked him if he wanted to do more PT or if he wanted to rest. He wanted to rest. I figured he had quite a day so he rested. 

His nurse and I noticed that Ethan wasn’t opening his right eye as much as his left.  I then saw him rubbing his eye with the blanket, a trick our dog Ferguson does when his bulbous globes are injured. 

Ophthalmology was called. They said now that he is more aware of things he is likely feeling the dryness and abrasion on his eye. We are going to up his artificial tears. He is on standing antibiotic drops for his eyes. So I will be watching that closely.

Ethan has graduated to no restraints. He is aware he shouldn’t be pulling or picking at things. He was snuggled under his glorious blanket (I can’t even stress how snuggly it is) and he started banging on the side of the bed, which is how he gets my attention. He had a panicked look on his face and I saw blood on his fingers. Not a lot of blood, but some blood.

I asked him where the blood was from and he pulled back the covers. He had removed the bandage that covered his 4 chest tube holes and 2 bipolar pacing wires, which are small wires that are screwed into each atrium and ventricle to assist in pacing the heart. He has had these wires since the transplant. Well he yanked one of the bipolar wires out with two wires attached. He just yanked it out of his heart tissue. 

“Oh. You removed your pacing wire.” I said calmly. My thoughts began to race. I calmly walked out of the room and word vomited all over the nurse “Ethan pulled his pacing wire out.”  She rushed in and began to look at the area it was attached to. She then left.  Ethan began to downward spiral panicking. His face crumpled and he was red. His mouth open trying to talk but there was no sound. His eyebrows were crunched down making massive sad wrinkles on his forehead. “What did I do?” He mouthed.  

Truthfully I wasn’t sure how bad it was. I wasn’t going to lie to him. “Calm down and focus on your breathing.” I said very calmly. The nurse went to discuss what had happened with the doctor. The nurse came back and said that all we can do is watch for signs of tamponade. Tamponade is when the sac around the heart fills with fluid/blood and puts pressure on the heart. This then affects blood pressure and it can be very serious. The fact Ethan is on blood thinners doesn’t help either. 

We had a stern discussion on not touching any of his cords, tubes or bandages or he will be restrained again.

We didn’t come this far to have something stupid happen.

Ethan also had a spontaneous breath trial is basically a litmus test to see how ready he is to breath without the aid of a ventilator.  It was supposed to be for 20 minutes. He did so well that he continued the trial for an hour and a half.  What an over achiever.

So far so good with Ethan’s damn pacing wire debacle. Ugh!

Lots of bright sides today. Seeing this kid sit up is just amazing.