💙 12/1 7:40 pm

Ethan’s cardiologist said he is the only kid on the floor using every single line on his monitor.

Today was supposed to be a quiet day of rest.  It mostly was.  Ethan is basically kept in a zombie state so he couldn’t remember his own name. 

Ethan has officially earned the title of being in a “pulmonary hypertensive crisis”. Ethan is either comatose or less comatose, gasping for air, turning blue from his oxygen within his blood stream falling into the 50% range when they should be above 95%. He is coughing with a tube in his mouth with his poor, cut in half and sewed back together (and undoubtably sore) chest. As you can imagine I prefer the comatose state.

This hypertension causes the right side of his heart to really work harder.  It can lead to right side heart failure (are you kidding me right now) but they are going to have a pulmonary team step in and take lead on the best way to treat these episodes before it comes to that.

It wasn’t quite the news I was hoping for.  Deep breath.

Looking at him laying in his hospital bed, he looks so weak. He looks tired. He is trying his hardest just to breathe.  He has some muscle wasting that is noticeable from a mom’s perspective, on his legs.

He had zero chest tubes removed. He was supposed to have 2 removed today. Here is the bright side; it wasn’t at all Ethan’s fault.  It wasn’t because he had more purulent discharge (ew) from the chest tubes. Nope, the reason was that the surgeon had a busy day and couldn’t. Tomorrow will be the day, and he may get all 4 out. That IS a bright side. I just know he will feel better after that.

We went up to 15 pumps today. That number is supposed to be going down. I am going to be patient. He’s stepping in shit again.....

You know what he is going to be pissed about? He wouldn’t have a video to upload on Wednesday.

Goodnight. I am going to bed early!