12/31 4:30 pm

 Let me introduce you to Janice AKA dialysis machine.

“Janice” has been started. She is loud and very much annoying just like Janice Hosenstein. Ethan has been in pain today. He is wincing and crying out but has no noise because of his tube. 

Ethan has not been like he normally has. There has been a change. He is less aware. He is not communicating as well, but not necessarily delirious, and out of sorts. Add in the pain he is displaying and it was making me want to vomit. The doctors and I had a discussion regarding his sedation/pain medication and what is best to keep him comfortable. Seeing his face crumple up in agony is one thing that sends me into a tailspin of  mental distress.

The doctors initially wanted to go up on the drug that made Ethan’s delirium significantly worse. I told them I wanted to avoid increasing that medication if at all possible. The one doctor had forgotten about his delirium. This is why I am afraid and anxious to leave. It’s not the doctors fault. He has many kids he is juggling. I have Ethan’s entire medical history in my head. I only have to juggle one kid. We work together. It takes a village to raise a child as well as a team to take care of Ethan. We are in this together. It is so important to have an advocate to be your voice when you need it.

At rounds they said Ethan has officially progressed to having pulmonary hemorrhage. He has a lot of blood in his lungs that requires suctioning and tweaked ventilation settings. He is coughing up blood clots at this point and requires frequent suctions. It is explained that it is tied into the fluid overload. Once we get that under control the blood in the lungs will dissipate. In the last 24 hours they have pulled off about 400 ml of blood out of his lungs.

The fluid overload is due to the kidney failure that he is in currently. Remember that kidney failure sounds scary but it means his kidneys aren’t working properly right now. They expect full recovery of the kidney(s). Maybe once the fluid comes off they can find the left kidney?

Janice can not be an over achiever and has to work slowly. Janice wipes out all Ethan’s electrolytes out and they need to be replaced. He also will not have any fluid restrictions and will be able to have IV food. He has been getting 1 teaspoon of caloric feed orally per hour for the past 2 days. Not too much for a 17 year old kid. The Janice machine will filter out the bad and leave the good once he starts back on IV feeds. The reason for the reduced feeds was that the kidneys just couldn’t handle all the fluid.

The goal is to remove 1 liter of fluid per 24 hours. I took some measurements to start. If you want to have an idea of his fluid retention I measured his left arm just below the elbow. This was a kid that went into his transplant wrong 127 #.

He is measuring 14 inches in his left arm. What does your arm measure compared to your weight?

The goal is to keep him very sedated while Janice does her job! No pain, just napping with a good chance of him never remembering how awful this has been. That is my goal.