1/29 6:00 pm

Ethan had some pain last night from his procedure. Add that to the damn tube he has had in his mouth for 10 weeks and it is hurting his throat. He has wasted away to make his bones prominent so they are bruising from laying on them for so long no matter how many times he is turned. He was super frustrated with his situation and rightfully so.

I asked him if he needed more pain medication and he looked at me with large, sad distant eyes and I knew the answer was yes. I know Ethan does not complain much - and when he does, to listen. He had complained about his throat. As he was trying to decide if he needed more pain medication, I was already asking the nurse for some for him. I looked back and he was nodding yes.

He had a new nurse, which has helped with him several times.  A familiar face, but has never had his case.

He got some pain medication and I decided that to go to bed (before 9). Around 9:30, I hear someone calling my name. I had ear plugs in. I opened my eyes and was greeted with the bright light of the room. I took out my ear plugs and the monitor was going off. Not the “hey there is something mildly wrong”  alarm, it was the panic inducing “shit’s going south fast” alarm. The nurse quickly said that Ethan’s heart rate was dangerously high. 

I darted my eyes around the room and sat up quickly. There were several people in the room. They were hustling around, calling information out. I saw that blasted red emergency cart parked outside our room. I hate that cart. As I looked to Ethan, he was getting a hard, white plastic board inserted underneath him. 

I knew he would be freaking out. I quickly got to his side by dodging some of the nurses and trying to stay out of the way.  I started to run my fingers through his hair. “Ethan, your heart rate is very fast, do you feel different or funny?” I asked. He shook his head no.

The staff had already attached pads to his chest for the cardioversion or zapping (which is my medical term for it).  There he lay, on a hard board, no support under his head and looking so uncomfortable and I am standing there telling him to focus on his breathing. I wanted to punch myself on his behalf. Imagine people calling out numbers and putting you on a board, attaching stickers and wires to your chest and then someone says “just relax”. I would tell them “hell no!”

I tried to put myself in his position. I would want to know what the hell is going on. I listened to what he was listening to. 

When an emergency situation happens a doctor stands at the foot of the bed. The list of emergency drug doses for him are taken off the wall. An all hands on deck alarm goes off to summons available staff to rush to the room to help. There are several nurses rushing to get emergency drugs drawn up.  They have to draw up the medication, log the medications they draw up as well as label them. Not all medications are given. If they are given the time needs to be documented.

The nurses have their respective stations.  One person grabs the clip board and is ready to chart what was given and the time. All of which will be recorded officially in the computer at a later time.

So as I listened to what Ethan was hearing “I need Epi” “give the dilauded” “who is drawing up the epi? Where is the Epi?”  “I have the Epi” there was lots of rushed footsteps. “Give the versed”  all these different voices and rushed talking.

“Breathe and relax” I calmly said over and over again, running my fingers through his hair. He had his eyes closed and was truly focused on his breathing. I would add in what they were doing too. “They are giving you medication to help you relax. You might feel sleepy.”

As they were getting ready for the zap, I stepped away from the bed when I heard them power in the device. A small hum that started low and increase in octaves as it warmed up. They hooked it up to his chest and were ready to reset his heart rate.   “Clear” was yelled out and everyone stepped away from the bed.

One of the doctors said “we are getting ready to use cardioversion on Ethan starting at 75.......clear?”  “Clear!” And a zap was delivered.

As Ethan took the shock his hands and legs flailed in the air. His whole body stiffened and jolted. His eyes were open wide with fear.  Pupils dilated. He immediately was mouthing words like “what just happened.” I was looking at him and the team was focused on his monitor. I started telling him why we did that again.  Also I said “Holy shit Ethan, you just got tased. We can add that to the list of things you survived.” He shook his head yes.  With the hearty amount of drugs he received, his eyelids became very heavy.  “No more zapping for now. Your heart rate is fixed.”  They removed the hard, white board. 

I made eye contact with one of the doctors. “Figures.....he got his pacing wires out today. We haven’t needed them in several weeks.” He said “this is Ethan.” Yes indeed it is.

It was determined he was in SVT.  Supraventricular Tachycardia.  This kid has his car in his heart always, get it?  SUPRAventricular tachycardia?  Mom joke. Second best to a dad joke.

SVT is a rapid heart beat that developed when the normal electrical impulses of the heart are disrupted. They do not know what caused it to elevate.

While they don’t know what caused him to go into Svt, he has been on medication to prevent it for his atrial flutter. They are increasing the frequency of how often he gets it. He then slept well because of all the drugs he got.

This morning, with his human clothes, he had to go to the bathroom. Like not the “I’m in need of a urinal kind”. What an awful process this is.  I understand that there is no other choice, but he got a plastic bedpan with a lining in it.  It was shimmied underneath him and he had to do his business sort of laying down, sort of sitting.

Ethan’s throat is still bothering him. He also is anxious and keeps looking at the monitor to see if his heart rate is ok.  Normally when people are “zapped” they are under anesthesia/sedation and he fully remembers it and is traumatized.

Ethan had OT/PT come. He was tired and didn’t feel like pushing it. With the events over the past day that happened, it was everyone’s consensus that if Ethan didn’t want to push it, we wouldn’t push it.

We sat Ethan up. We had Lincoln park blaring.  He was on spontaneous breathing which meant he was doing all the work on even lower setting than yesterday. He sat up for several minutes, continuing to Kick Ass even when he felt tired. While he was sitting up he was also “marching” his legs. He did awesome. He then laid back down and took a long nap. 

During rounds, he past events of last night were discussed. After reviewing the X-ray there is some discussion of if his relocation of the dialysis triggered the arrhythmia.  If the atrium is stimulated, you can see SVT as a result. They will see if it repeats. If it does they will consider moving the catheter out a little bit.

Ethan had a breathing test done today to measure the amount of calories he is extending to breath. It was easy, they just put a piece on the breathing tube to measure it. They will use that number to come up with a calculated number of calories for him to consume at rest.  So far he is getting 3600 calories a day. Through oral and IV nutrition.

Later, the dietician contacted me via text and the following exchange occurred:

I had visions of people saying “how did you lose weight?” And me responding “I just started breathing a little more and it melted away.”

The afternoon was spent snoozing and watching a movie. I encouraged PT but he was tired. They came down on his vent setting while he was breathing on his own. I am told this is its own work out.

Psych came by. They were not supposed to come by today, not until next week.  At rounds, I mentioned that yesterday I thought Ethan was worrying about things.  When psych came yesterday, he eluded that he was not.  Today when they came, I pushed Ethan a little.  I had told him today about his stroke and how he was lucky because even with all the medications he was navigating his arms and legs well. I also told him there was a plan for him to go to MRI this weekend, probably Sunday, to see how things are looking in his brain. 

Ethan is feeling like he is losing time. He has things he wants to do and school work he needs to get done.  We keep telling him that while this seems like a long drawn out process that one day it will be a short snippet of time in his life timeline.

As I spoke to psych on my window seat (because he was sleeping), he summoned me over to his bed. He wanted to know what we were talking about. Then through a series of questions he finally admitted that he was feeling a bit down about his situation. He was worrying a lot. Last night was scary and awful and he was worrying. He felt like he needed something extra for the worry. We then set up a plan to pair that with talking and therapy when he gets his tube out. I really like this plan and feel it will be beneficial for his brain. He has a lot to cope with and Paul and I just aren’t professionals and don’t want to screw it up for him.

If he can learn proper coping skills from professionals for this, he will be much better equipped to deal with life down the road.

He has been using his communication board and writing messages. He also sent his first text message since the transplant, to his girlfriend on my phone.

Ethan finished his day with 10 hours of breathing on his own with lowered vent settings. Way to go kid.