🫀Update 11/25 4:20 pm

 Ethan is continuing to try to communicate more and more. We haven’t found a great way to do it yet. We have tried an app.  We tried paper and pen, we have tried a white board and dry erase marker, I pad....keep in mind this kid is busting through a good dose of morphine and fentanyl to do so. He was really getting frustrated when I couldn’t understand his charades  of pointing at the TV. Finally after an hour or so....I realized he wanted the TV closer.

It makes me wonder how his eyesight is. I wonder if it is affected with the sedation. If his brain to eye connection isn’t as fast. He was holding the letter chart I told him to spell out what he wanted and he was not able to do that. Time and less sedation will tell if and how he can be supported.

The ECMO team, together with cardiology turned down the amount of help the machine was giving Ethan’s heart and lungs. They watched via ultrasound how his new heart responded. It was very encouraging and they thing over the next two days, they will continue to wean him down.  Once he proves his new heart is strong enough to take over the full capacity, he will go back to surgery, they will remove the ECMO tubes and close up his chest. Then Ethan can focus on actually moving and gaining his strength back. Yeah!!!! What a win!  They seemed very surprised with how well Ethan has done considering what terrible shape he was in on Sunday/Monday.

He has developed a clot on his left side, inside his heart.  The Dr.’s said it has not gotten any bigger from yesterday and that at this point they will use medicine to help the body resorb it. There was talk of surgically removing it, but they ditched that idea after seeing the echo today.

Ethan also has not eaten since Saturday at lunchtime. Anyone who knows Ethan, knows he becomes a hangry bear if he goes more than a few hours with no food. Since it has been several days, he will be getting a tube inserted into his nose that will go down the back of his throat, through his stomach, into his small intestines.  This will allow Ethan to receive some nutrition to support his healing. His nurse had extra sedation ready.

They started to insert the tube and he acted as if sedation was never given.  He pushed through the EXTRA morphine and EXTRA fentanyl as well as dexdemetadine. Ok. We stopped right away and are now trying to safely add more. This kid is like the hulk. You can shoot him with a horse tranquilizer and he still keeps going. So they are trying to get some elephant tranquilizer so he doesn’t feel a thing, as we determined earlier, I can’t allow to happen again.

Also, side note....we found out Ethan made the highest honor roll at school. Great job kid.

So for now, he has The Office on. Ethan is doing what he said he would...he is kicking ass and pushing through.