Still in ICU

We spent the night in ICU again last night.  Not because Ethan isn't doing well, but because they didn't have a room available on the regular floor for him.  We are sill in ICU today with no end in sight. Everyone has been so nice and helpful. Ethan's nurse even smuggled him in a donut.

I am constantly looking at all the lab work that is being done. The good news is that Ethan's lab work is improving, so the medication is working. He is tolerating it well and his blood pressure has remained stable. I did however notice a positive Lyme antibody test. Damnit!  I treat the dog's with two different products YEAR ROUND to protect against Lyme disease.  Guess I am going to have to start putting a collar on Ethan and giving him a beef flavored chew. It works for the dogs.

I didn't even know they were going to run that. Ethan's cardiologist came in to examine him this morning and I inquired about the positive Lyme result.   He just looked at me and said "I didn't even know it was positive."

His doctor went right out and pulled up Ethan's lab work.  He was discussing the Lyme positive result. I asked if they were going to run a quantitative test to determine if it was an active infection or just tick exposure and if they were, do they run it on the C6 antibody test or what kind of test do they run for that? If it came back positive would he just be put on a long course of doxycycline? His cardiologist looked at me puzzled and said they were running an additional test and it seemed that I knew more about the process than they did. I laughed and told them that Monroe County is a Lyme endemic area.

He later came into the room to introduce Ethan's nurse Practitioner.  He said "what do you do for a living?" I felt honored.  I also told him I am capable in managing the infusion and am not at all intimidated by it.  It seems pretty straightforward.  It is an infusion pump.  I am familiar with them at work.  Approximately every 10 hours I need to switch out his medication bag (which I do at work) so it seems I have been training for this (with animals, not humans) for the past 20 something years....  Bring it on.

The goal is to transfer us to the regular floor for monitoring for 24 hours. We are urging the staff to send Ethan home because he is frankly losing his mind here. Ethan feels bad that he is "keeping a room from someone who really needs it" when he doesn't feel sick. 

Also during rounds this morning we discussed that Ethan has strongly voiced that he wants to go home. Ethan's cardiologist said he wanted him here for a few more days.  Ethan's ICU doctor replied with "He wants to go home and I am not about to get in his way." Because of that comment, the focus shifted to how do we get this kid out of here? Plans are currently being put in place for us to have a home care specialist to come and show us how to manage his medications in the apartment.

They sent the most perfect physical therapist to help get Ethan mobile.  He just so happened was really into cars. Ethan enjoyed swapping stories while the physical therapist "Took Ethan for a walk". Pretty much someone to hold all his cords and wheel his pole along to give him some freedom.  I tried to get him to make Ethan walk all 11 flights of stairs but apparently that was a bad idea. Ha ha.  They had a great chat about cars.  Ethan really liked him.

And finally, I have discovered that Ethan and I have a similar "elimination" complex. When we first arrived, the nurse showed me where I could go to the bathroom, a private room down the hall.  They were measuring Ethan's "urine output" and told him for any other deposits, they would wheel in a porta potty for him. OMG! I started to panic for him. How many other people's turds were in that potty when he has to use it? Yuck!

I was immediately anxious about this idea. I can't imagine being in the hospital and having the announcement made that a porta potty was needed in my room.  I would imagine all the lights to start flashing, an announcement over the loud speaker stating "Deuce Alert! Deuce Alert!" and having all the other people seeing the porta potty wheeled to my room.  I would then imagine that I would have to  have someone waiting outside my room until I was done going...secretly recording any audio that may occur during the "event" and selling it to Hollywood for special effects in a movie. Then a ceremonious wheeling the crap collector away from my room leaving a trail of stench over the entire ICU.   Making my fellow ICU neighbors sicker than they already were. Then it becomes someone's job to clean it out.  Yep I would pretty much want to die first. Maybe I was projecting my own ill feelings about the whole situation on to Ethan. If you think I am being dramatic.....occasionally I am. Welcome to the rabbit hole of my brain.

Ethan, felt the exact same way.  I didn't pick up on it at first.  But he dealt with it by eating hardly anything. Little input, little output. He's a realist. I caught on yesterday and encouraged him to eat. This morning I did what any other good mother would do and showed him x-rays of people that have developed Mega-Colon. I told him he was going to get colonic distension from not going and then be in a real shitty situation - pun intended. Today, when they released him to let him walk around, he was granted freedom to use the properly plumbed bathroom discreetly, whenever he needed to instead of the mobile shit tank. So that is a win. No one ever prepared us for the porta potty.

Ethan was able to attend his online classes. 

We just got word we are moving from ICU to the regular floor. Apparently it is quite the process. Ethan will get an EKG tomorrow and his pump and IV medications have been ordered. We hope to arrive home tomorrow afternoon. 

FYI: status 1 B is not the most urgent listing and not the least urgent listing.  Likely a 1-2 month wait.