💓 11/30 1:15 pm

 This morning has been quiet. Ethan has stirred a couple times because he is basically dealing with pneumonia with a straw in his mouth.  He coughs and has "yuck" (It's a medical term) in his breathing tube.  It plugs the tube, his oxygen drops, his blood pressure drops and he doesn't realize that he has pneumonia so he thinks something is wrong.  His oxygen level has been between 65 -90 so far today.  I don't like it at all.  I would prefer above 90 as would they, but  he is doing the best he can. They have turned up his oxygenation and given him multiple breathing treatments.

He has been communicating a little bit more with yes and no questions. He has only asked for his phone once, which is pretty hilarious because he can't even keep his eyes open, his hands are tethered, his is in no shape to hold a phone let alone use it. He's a funny kid.  He so badly wants to text Jesney (his girlfriend) because he knows she is worried about him.

The plan today will be to start him on a medication that helps with arrhythmias and then see if he can avoid arterial flutter. They will discontinue that pacing and see what he does.  They can add/change medications as they need to.  Some of the other medications he is on have a side effect of arrhythmias so they are hopeful that this will be a short lived issue as we progress.

One of his surgeons came in to check his incision and chest tubes.  She said they looked great. I agree. They are draining minimal clear fluid. She said they will come out tomorrow.  Her and her magic surgeon hands will remove them then.

Ethan had his urinary catheter removed. Another outside, funnel like catheter was placed. It is less invasive, but it confused Ethan the last time he had one. I can't imagine trying to process basic functions being under heavy sedation.

The sores on his head have healed, from all the brain electrodes they put on him and removed, twice. I am glad he wont have to feel them healing.

I think the pneumonia set him back a step with getting his breathing tube out. While it is in, he remains sedated and sleeping gaining strength.  He has only lost 6 pounds. Pretty good considering he hasn't really eaten in over a week, with the exception of the 12 hours or so he got the protein diet.

Ethan's temperature is still flip flopping between 99-102.5. This is due to the pneumonia.  Unfortunately the antibiotics have to do the trick because they killed off Ethan's immune system to avoid rejection of the new heart.

They plan on taking him later this afternoon to the cath lab and inserting a device into his lungs through an artery to measure his lung pressures. They will leave that in place for the next few days. They will also do his first biopsy to see if any rejection has started. To do this, they feed a wire though his vessel and once they get to the heart, they grab a small piece of it and examine it under the microscope for criteria that Ethan's body is attacking his heart. I feel nervous about this because it's a 50/50 chance that it could be happening. I just don't want anything to be harder for Ethan.  I know that they do this and can tweak things quickly if that is the case. This is why they check for rejection so frequently.  I just know how Ethan likes to add in his own little twists on how the day should go. Fingers crossed.

His kidneys have taken a little bit of a beating over the past week. They are trying to protect them as much as possible, while picking and choosing medications. Concern over kidney damage is on the radar, but at this point it is not enough to warrant intervention.

I asked him this morning if he wanted to listen to music. He sort of nodded, but it wasn't a super enthusiastic nod.  I asked him if he wanted to watch the office.  That was a much more enthusiastic nod.  He is currently watching it through his eyelids. I enjoy listening to it. 

I can hear nurse BM-BP (don't forget the hyphen) all the way down the hall. She has the mouth of a puppet.  Wide and big. But she is not in our room.

It is a rainy and crappy day.  It is very gray out. I can't help but keep the donor family in my thoughts.  This time of year is especially hard to lose someone, especially someone so young. 

I have contacted Ethan's school to let them know he will not be in school this week because Ethan is unconscious.  That was sort of a funny e-mail to send. Not your run of the mill absent notes they receive.

Thank you all for thinking of us and all the fun texts, messages and emails. 

Paul and I really appreciate it.