Day 4 CV-ICU March 24, 2017

Last night after the shift change we watched movies until about 10:30 when our night nurse turned down the lights and told Nicholas and our neighbor boy, Samuel, that it was time for bed. I must have crashed pretty hard. I woke up several times throughout the night and Nicholas was awake, quietly watching movies. The night was uneventful. 

I woke up at about 6:20 and Nicholas had to go pee, so I helped him go. I asked him why he didn't sleep much and he said it was because he had to pee and I was asleep so he just held it. I told him to please wake me up if that happens again because it isn't good to hold it like that and that I am here to take care of you! 

I left from 7:00 to 7:30 like I have to during shift change. I went down to the cafeteria and bought Nicholas some scrambled eggs with cheese and a banana. When I got back to the room, I made sure it was ok with the nurse if I gave him some real food, and she said it was fine. He cautiously ate his banana and half the eggs! I think that really helped give him some much needed energy!

The echo tech came in around 8:30. She called down to the radiologist who reads the echo and then she called the head cardiologist to make sure they liked the images she got. They did not. She tried again and called again. She said that the head cardiologist would have to come up here himself because that was the best she could get. Right then, the cardiac team came by for rounds and one of them talked to the head cardiologist downstairs. While she was on the phone with him, Dr Hanley called her and said that the LV looks about the same as yesterday and therefore, Nicholas would have to wait at least until tomorrow to have the LV cardiac line removed. This means that all the other tubes and IV's and "lines" coming out of his body must stay as well. If that is not bad enough, it also means that he cannot get out of bed.   

Nicholas and his friend, Samuel

I tried to keep Nicholas happy, to look on the bright side, he could eat and order anything he wants from the menu. So we ordered a brunchish feast, with some breakfast and lunch. He ate a few bites of this and a few bites of that. His little neighbor guy, Samuel, even gave him a slice of chocolate cake which his mom brought him to celebrate him leaving the CV-ICU to go upstairs to general recovery. Nick's surprise of the morning was when Lorenzo walked through the door with balloons, cards, gifts, and lots of hugs for our boy. Nicholas cried some happy tears to see his daddy and it was obvious he was so happy to see him. (Lorenzo left on Wednesday after the chest tube was pulled so he could spend a few days with Sienna before more family could take care of her.)

The day went mostly well, with periods of being content and periods of sadness. I suspect that Nicholas is in discomfort, to say the least, if not pain. His blood pressure seems higher today and that leads me to think it's because he's agitated from all the tubes and lines coming out of his body. I remember the depression he dealt with after the last surgery and I'm sure it's partly PTSD and trauma coupled with the effects of all the drugs and anesthesia. He has a pump for pain and he uses it very sparingly along with a dose of Tylenol every 6 hours. He is not good about communicating details of how he feels so I'm not convinced that he doesn't hurt more than he leads us to believe. 

The physical therapist and occupational therapist came by to give Nicholas some exercises to work on over the weekend to keep his strength up. Poor guy just looks at those as pouring salt on his open wound. He wants to get out of bed and walk, not lay there and do leg pumps. He is really having a hard time. 

Later in the evening, I could tell that he was really getting tired so I encouraged him to take a nap. He slept hard and deeply, so that was good. He woke up again around shift change at 7:00 and stayed up until about 8:30, when his blood pressure started rising again. A few times it was really up there and the night nurse said the team called from the nurses station and said they wanted to lower his dopamine down, and I said I thought it was already at the lowest dose? I do not know when it was ordered to be raised up because I thought it was nice and stable yesterday. I even told the nurse today that I thought it seemed higher than it had been and it bothers me that I wasn't told that it was raised. 

Nicholas ordered a good dinner, which he never ate. He seemed more and more agitated and upset. Finally he fell asleep around 9:30 and he is sleeping soundly now. I am sure he's very tired from all of this and his body needs lots of time to heal.