Extremely Rough Night

We don't feel like we were prepared for the kind of night that Ethan could have following his surgery, but then again, I don't know how anyone can prepare you for seeing your child struggle. As far as his heart goes, Ethan is doing great - still not on any heart meds and keeping his blood pressure in a great range. Praise God for this.

About last night - Ethan was really agitated all night long - only resting for 5 to 10 minutes at a time and then thrashing around and moaning. We had to restrain him (sometime it took 3 of us) to keep him from tugging out all the tubes. We tried holding him and then just letting him lay in his bed, nothing made him comfortable. He definitely got a lot of drugs for the pain and agitation, but they didn't seem to work very well. It is frustrating that the nurses and doctors can't just say "do this and that" and then he will be fine. It is a guessing game with each child. Each one is individual and what works for one doesn't work for another. So, all they can do is try one thing and if that doesn't work, try something else. Ethan's poor nurse and doctor had some very frustrated parents and a very emotional mom to deal with, in addition to Ethan!

But, since 6am, he has been resting the most comfortably since they took him off the vent. He no longer has the IV line in his neck (OUCH!) and his left hand. So, he can suck his left thumb and lay on his side or stomach much more comfortably. Part of his thrashing around last night was his attempt to roll onto his stomach to sleep, and when we restrained him, it made him mad, which made him hurt.

We have been told several times that healing from a thoracotomy (side incision) is much more painful than healing from open heart surgery - this is what adults have said who have been through heart surgery.

Another positive this morning is that he has been able to cough on his own and get some of the junk out of his throat. Hopefully he can continue to do this as there is a risk of pneumonia if that stuff goes into his lungs. But coughing hurts, which just upsets him more.

The labs they took this morning came back saying his sodium is low, so they have him on some meds to stabilize that. They are not quite sure why this is happening. For this reason, he will stay in the PICU because there is a risk of a seizure if his sodium level gets too low. They will monitor it closely and we will pray that the meds help. He is also on Lasix to make him pee more.

He is still hoarse and the surgeon explained to me this morning that in the type of surgery that Ethan had, there is a risk of damage to a vocal chord nerve that wraps around his aortic artery. He did see part of the nerve while he was doing the repair and was able to move it out of the way, but there is still a risk that it was damaged during surgery. He said that most of the time it will heal, but sometimes it doesn't and I am really not sure what all that means, but we will cross that bridge when we get there. He was hoarse for 6 weeks after his first surgery, so I know it can take time for the vocal chords to heal.

Please keep praying for us.