1/4 4:50pm

At rounds there were 17 people. 17 brilliant minds discussing what will be best for this kid. It is overwhelming to look at the sea of faces and their concerned and furrowed brows. I don’t know what their whole faces look like so I have to read their limited, masked expressions. I didn’t realize how much I relied on facial expression as a form of communication. It was scary. Ethan is a sick, sick kid right now. I know he isn’t doing so hot. It is nice to know there are so many people working together for him. 

It is hard to just submit to trusting that whatever happens, is the way it is supposed to happen. This is not a resignation of being supportive, it’s another coping skill and me blindly handing the reigns over to fate. There are just things you can’t control. If there was a way to make Ethan better purely on the love I have for him, he would have already been home by now.

The team established some goals for Ethan. 

Step 1. Stabilize blood pressure. 

Step 2. Take off fluid through dialysis. 

Step 3. A repeat of step 2.  

Step 4. A repeat of step 2.

He has fluid everywhere. He has lobulated fluid sacs around his heart so they can’t even drain them. Fluid around and in his lungs. Fluid in all his extremities, face and abdomen. He is going to float away.

His Car buddy PT guy stopped by to check on him. I thought that was nice. 

Yesterday during his vessel ultrasound it was discovered that Ethan has a clot in his left jugular vein. This wouldn’t be too terrible except he has a communication (hole) that was placed between the left and right ventricles during the first removal of ECMO to support the right side of his heart. If that clot dislodges, that would be catastrophic. Still not a priority at this point. All eggs are going in the Janice basket today.

When we first started with rounds, 6 weeks ago, they would start by saying “This is a 17 year old heart transplant patient, Ethan,” and then they would ramble off his medical history starting with his heart surgery when he was 9months old. Now they start by saying “we all know Ethan” a sign we have been here too long.

Ethan was examined by the ophthalmologist. I wasn’t overly loving the way Ethan’s eyeballs looked. His nurses try to keep up with them and where they fall behind, I step in and medicate/lubricate. It is by no means because they are lazy. He has two nurses today that have been so busy they are like 2 tornados in the room. I just pick up after them because I know it helps in some small way.

The ophthalmologist agreed they still looked red and sore. He created some “moisture chambers” with these plastic covers with whiffle ball holes in them and placed a clear sticky plastic over them. He will be back to see how they look tomorrow. He was being innovative.  I told him I thought they should design something for patients like this. Apparently they do but the hospital doesn’t carry them. I had him show me what to order on Amazon. 

Ethan is having thick, brown clots suctioned from his breathing tube. Luckily it isn’t as reflective of pulmonary hemorrhage, it is more trying to clean up the “mess” in there. His right side is now starting to collapse. The X-ray looks bad. His respiratory culture came back growing some bacteria so they added two different antibiotics to help that. Remember he has no immune system and a breathing tube that has been in for way to long.

They have changed, tweaked and adjusted all of Ethan’s medications to optimize heart, lung and kidney health as best as they can. This is no easy feat.

We are up to 19 pumps. 19 pumps with 19 different things going into Ethan. It doesn’t include the two lines dedicated to Janice. 19 pumps that give 19 alarms and 19 reasons for me to want to jump out the window when they go off.  

Some medications can’t be given together or even at the same dime in different spots. It has been deemed Ethan is the most complicated case in the floor right now. 

Insulin has been started again. They suspect Ethan’s high glucose is because of the high doses of steroid. This will likely subside as the medication is weaned off.

Ethan’s cardiologist stopped by to look at Ethan. He said Ethan has had progress today. He is still not out of the woods and not as well as two days ago. But I will take the word “progress”. He is at least stable for now.

The next unit over has a fire alarm going off. They engaged the “fire doors”. I can’t help to think that my dad had something to do with it just as a sign to let me know he is looking over Ethan. It went off for like 30 minutes.

Today has been busy. The last 24 hours have been scary. I am so thankful for the staff here. These people can really hustle. I still have confidence he is going to come out of this stronger than ever.