Update 11/25 7:30 pm

Because of Ethan’s stroke and true fact he is having some weakness, Physical therapy came to fit Ethan with some snazzy boots. They sort of look like Moon Boots. Moon boots were all the rage when I was in my single digit years of life. They were like marshmallows for your feet. There was a bit of a design flaw because I always had to put a bread bag or shopping bag on my feet to keep them dry.

These boots are to help his feet stay in position and not lose memory so it is easier for him to walk after his next surgery. They keep telling me either Friday or Saturday.

He also got a fancy wrist brace. His super hero bullet proof wrist brace.  Well maybe not bullet proof but I will tell him it is and he is being a super hero. So it works.

The blood gasses they took while Ethan was mostly off ECMO revealed that his lungs aren’t quite functioning as well as they should and they need just a little more time. They are not going to start to wean him off until tomorrow.

None of the staff can believe how awake Ethan is on ECMO. Normally I am told that kids are basically in a coma. They don’t move or respond. This kid is asking for the office to be on. I set up the eye pad on his bedside so that he can watch it. I put a picture below.

They had to put in Ethan’s feeding tube.  Ugh! You know this has got to suck. Round 1 was a fail, even with extra sedation.  Round 2 was not much better with an additional but different sedation given. He was so frustrated and painful the floor doctor whisked in and gave him something else. The probe was going back and forth trying to find the right spot. They had to feed it through the valve that separates the stomach from the intestines. For some reason they were hitting resistance.

He was lifting his head and legs off the pillow as an instinctual reaction, I am sure in his mind, was to stay alive. His face red and had a drop of agony, despair in each tear that was expelled from his tightly closed eyes. 

His face was so red. As I watched, I saw the canyon covered with sterile dressing in his chest heaving in and out with each breath he was so desperately trying to control.

Have you ever had one of those dreams, where you are screaming at the top of your lungs, but no sound comes out? He was doing that screaming. This horrific nightmare only lasted a very short time but was upsetting. That’s when the floor doctor came in and gave him a nice dose of medication that is similar to Valium. Oh....Ethan liked that medication. He was able to go to la la land and drive his supra into the sunset.

The worst torture a mother can ever see her child go through has been presented to me multiple times this week. As I process what I watched I can only think about how thankful I am that Ethan has something that he can heal from. I also realized it wasn’t the worst torture. I think of the mother that grieves her child that she can’t talk to and laugh with anymore. She is grieving the child that gave Ethan his new chance at life. It’s all perspective.  I look forward to more super fast ATV rides with him and laughing our butts off at stupid TV shows.  I am thankful I have the chance to do that again. Hopefully sooner than later.