12/30 4:40 pm

So I inquired about getting this show on the road with dialysis. I feel it is inhumane to let Ethan continue down this stagnant path he is on.  The paperwork lady came in to go over the risks and benefits. Sign my life away. As the paperwork lady was going over everything, the critical care doctor walked up and said he had just gotten off the phone with the renal doctor. She was cautioning to give it a little more time. 

The critical care doctor asked me how I thought Ethan has done over the last 24 hours.  I evaluated each and every aspect of what I had seen. He is still swollen. Even with increased diuretics. His oxygen levels are still low even with higher vent settings. We had to go up and not down on the vent settings. They are suctioning old bloody secretions from his tube a few times an hour which obviously pains him. His renal values have crept up from yesterday. There is no solid answer that anything has improved but maybe his delirium and even that is only slightly.

So my answer was “I have not seen any significant improvement. No signs saying...keep trying. He has been stagnant, if anything gone backwards. We need to make a change and if the dialysis can help, I feel it is inhumane if we don’t move forward and try.”

The renal doctors hesitation is valid. It was explained that if the kidney goes on dialysis it gets lazy. It takes some work to get it to function again. Ethan’s numbers aren’t “dialysis level” yet so she is being cautious.

Ethan’s cardiologist walked up. I told him my thoughts and concerns and worries. Of course doctors have to give vague answers and can’t make any promises or decisions for you. They present the options and go over the pros and cons and direct you to treatment options. I told him I felt strongly Ethan was not headed in a great direction. He agreed. He also said “Typically this makes a great impact in treatment for most kids.  Ethan doesn’t like to follow the rules (they are getting it) so he is a wild card.”

Phew! This is flipping hard. I am ready to embrace a positive change and will leave it up to the experts to guide me.

My respiratory buddy came up to visit Ethan. He was on another floor. I shared a margarita with him, which means I sent him home with a can.  He loved it and ended up ordering a case from a local liquor store.

After rounds happened, they decided to place the line for dialysis but ultimately hold off on dialysis until later. They changed his diuretic regimen and added and changed some other things with his medications being careful to avoid the delirium medication at my insistence. They are also going to continue monitoring all of his blood gases, electrolytes and all other blood values very closely and when we need to jump, we are ready. There were some changes to his pulmonary hypertension medications to see if that helps him out.

Ethan will be getting another transfusion today to help him feel better.  This low oxygen sucks and I don’t like it.

I washed my clothes and am good for another week. Woo hoo! Hopefully the health department clears the laundry facility by next week.

When I returned from the hospital things had been delayed. They hadn’t gotten the blood they needed as well as the bolus diuretics but they were in the middle of putting in the dialysis catheter. The critical care doctor said that he had met with the renal doctor again and Ethan’s cardiologist and decided the best course of action was to wait and see his response. I am a little frustrated because I wanted it all done more quickly. Sometimes I do have unrealistic expectations with so many hands in the pot.

I did get more Christmas cards today when I went back to the apartment. I appreciate it and will be hanging them all for Ethan. He is not even going to believe he missed all the holidays.

On a side note, Paul got multiple well wishes on his 55 th birthday and had no idea why until he read the blog. I think he was developing a complex. As everyone knows, I do like to prank Paul as much as possible. That was fun and made his day.