🫀12/28 7:10 pm

 Today’s X-ray report: “Worsening aeration lungs with confluent hazy airspace opacities present bilaterally, favored to represent worsening pulmonary/alveolar edema. Superimposed infection should be excluded clinically.”

I am a bit bummed about all the fluid this kid is retaining. His X-rays are seemingly worse due to all the fluid retention. They are switching up his diuretic protocol because his kidneys have become unhappy again. Flush the kidneys, remove all the extra fluid. This kids belly button has disappeared. He has a large abdomen and his arms and legs are full of fluid. If you squeeze his arm to much your hand divot will stay on his arm. Hoping to see more improvement with fluids going down over the next day or two.

His Echo revealed that the right sided heart failure is in the mild to moderate category which is relatively unchanged. His pro bnp test came back 23,000, it should be less than 250. But it is coming down, it was higher a few weeks ago. So this is good news.

Ethan had cultures done because he has a fever again. I have told them in the past with Ethan’s history of excessive pneumonia’s he typically needs a longer course of antibiotics. So far that idea has not seemed to resonate with the doctors. I am keeping in mind that these are people that know WAY more than me. I just hate that he keeps getting caught in this cycle. The respiratory culture is the only one that has grown bacteria in the past.

Physical therapy came this morning and are pleased with his movements. He sort of participated and sort of napped.

Ethan is having trouble processing that he can’t get off the bed. He keeps trying to pull himself up. He thinks the closet in the room is a bathroom. I had to open the door and leave it open to remind him it is just a closet. He HATES the bathroom situation. We are so much alike it isn’t even funny. I told him to trust me, where he is going to the bathroom is way cleaner than where I am going to the bathroom.

Psych came to evaluate Ethan’s delirium. After the report the nurse and I gave, the psych team is going to increase his dose of medications to help with delirium.

During rounds Ethan’s oxygen dropped so I missed most of it as I was trying to calm him down while another nurse suctioned his tube. His lips were turning purple but he was able to stabilize his lung and blood pressures without a catastrophic event which is improvement. Huge improvement.

His lung pressures they are setting a goal to get them to 5. Ethan is now running low 20’s to 30 depending on how upset he gets.  We have a little work to do still. We are still doing the “pulmonary toileting” which I chuckle every time it is said.

His cardiologist said that he still is within the time frame that his lung pressure will correct itself over time. Then he said “it is very rare that they require medication for over a year.” He said. I looked at him and said “ugh! You said in rare cases, we are screwed now! Why did you say that out loud? He is going to see that is a challenge.” He shook his head and yelled over to Ethan “That was NOT a challenge Ethan.” I waved my finger at him and shook my head. “Never again. We aren’t going to say words like rare cases ok, or you can not be our friend.” A threat I meant!

What was he thinking? Honestly!

This evening the diuretics were taken up a notch as Ethan’s pulmonary hypertension has gotten a little worse. They decreased his feeds because they are trying to cut down as much fluid going into him as possible. It may be a hectic few days trying to get this kid to dump a few liters and preserve his kidneys....or should I say kidney? 

I wanted to thank everyone for the Christmas cards, get well cards and surprise goodie boxes. Thank you for being so thoughtful. I have arranged them for Ethan to see when he actually can process what he is looking at for more than 10 seconds.

Also, I was on the portal with Paul and Avery. We got a moment of clarity that Paul and Avery were talking to him.  He saw them. His face changed and he waved at them. He quickly fell asleep.  

He had another moment late afternoon where I went to get my dinner and when I came in the room I paused at the end of the bed and said “oh hey Ethan.”  He was looking right at me. He waved at me. I was so excited.