🎄12/22 4:50 pm

 After rounds today I felt a bit bummed. The plan is to continue what we are doing by inching up on the lung pressure medications and then adjusting everything else as Ethan needs it to remain stable. His blood pressure goes up when he is turned or his teeth are brushed or his tube is auctioned. I have had this nagging feeling.  I candidly asked the doctor “Is he heading in the right direction?” She paused a moment and then carefully chose her words. I have seen this maneuver done by doctors when they are trying to discuss something difficult.

I see Ethan every day. I know he is a “sick” kid. I know he is not ideally where he should be in his recovery process. We were hoping to be out of the hospital at this point or at least being able to talk to one another. No one could have anticipated such a prolonged and difficult recovery.

The doctor replied with “He hasn’t gotten any worse since yesterday. (Insert long awkward pause). He also hasn’t improved. He is on a plateau.” Her voice was full of a mixture of pity and disappointment. “Obviously we have to go very slow with Ethan and the waiting can very difficult.”

Today Ethan’s lung pressures have gone up. He is also positive 2.2 liters. They are trying to diurese him. His kidney values have gone up and his respiratory culture grew some organisms. The broad spectrum antibiotic they are using doesn’t play nicely with Ethan’s kidneys, so they switched his antibiotic to something different. 

My mind started to wander to the “what if’s”.  This is a very dangerous road. What if he doesn’t get better? What if we never get to have another conversation? I was able to stop it before it go too out of control.  I deferred to life’s million dollar question.  What is the bright side? I had to stop the negative thoughts.

Hmmmm....the bright side. Well, he hasn’t gotten worse.  That is a bright side. His feet and hands are nice and stretched and mobile from all his PT which will help him once he wakes up. 

Paul calls me on his way to work every morning. I think he will agree that this is a bright side. He entertains me with his vision of life through his eyes. Things that annoy him and things he thinks are funny. We laugh.  I look forward to it because I know he will make me laugh and I like making him laugh too. I just generally feel better after finishing a conversation with him.

My last bright side for this afternoon is one of my favorites.  I have totally enjoyed all the people that have texted me while on the toilet! This has been a real bright spot in my day. It has made me laugh.  I have also get a little jealous of all of you in your clean bathrooms.

When life seems really shitty, reframe what you are looking at.  I am in a better place now, thankfully.