🏎 1/18 7:15 pm

Ethan was a little delirious this morning but it seemed to settle down with medication. He ended up getting upset (he can’t remember what all the machines are for or why he still has the tube in).  I ended up giving him his pep talk about what a great job he is doing. A nurse came in and showed Ethan’s current nurse, Ethan’s Instagram page.

Ethan napped off and on throughout the morning. I noticed he has started to collect fluid again.  It likely is because stupid Janice broke last night and they did another diuretic challenge. I met with the renal team to asked if we could skip these for now as it is evident he still needs the dialysis. The doctor said she was going to recommend that at rounds today and agrees he is not ready and it is counter productive at this point.  

Ethan did urinate with the challenge. Who knew urine would be so exciting to see? I mean I saw it and was clapping and cheering him on. I wasn’t the only lunatic engaging in this behavior.

I have been doing Ethan’s PT/OT, applying his braces, oral care, eye care and assisting with turns. Ethan did well with the PT/OT and seems pleased to do it. He likes to show what he can do. We are stretching and trying to strengthen. Today he fell asleep through it. My biggest job seems to be reminding Ethan that our closet isn’t a bathroom and he can’t get out of bed.

I have to use this yucky tasting (per Ethan) medication to try and keep the yeast off his tongue and out of his mouth. He really doesn’t care for it much.

After rounds, since Ethan didn’t have his best night, they are keeping his sedation as is. No weaning.  His X-ray wasn’t his best so they are also going to keep his vent settings the same. He is going to have a day of rest. All because Janice quit working. Stupid Janice. 

I brought up my concern about his history of illeus. His stomach is so distended. It’s almost like I can see the back up as a visible line where his transverse colon lies.

They are going to beef up his belly regimen. This may be a mess later, but it is needed.

Ethan has slept a lot today. He has officially gotten his days and nights mixed up. I woke him up mid afternoon and tried to keep him up for a few hours. 

As the evening approached, some of the delirium arrived although so far better than last night, it’s like I am a broken record. “ don’t pull this, don’t touch that. Stay in the bed, that closet is not a bathroom.” I found that when I repeat myself, I say things louder. By the third and fourth time, I am practically yelling all while knowing my volume isn’t the issue. I will work on it.

My bright side today was that I was a big help to the nurse today. I was also a big help to Ethan.  Here is hoping for a quiet night, maybe?