12/20 5:30 pm

Ethan has had a relatively quiet day. A quiet day of healing.  His scar is looking better and better. His chest tube holes are granulating in nicely. His scar from the ICD removal healed well. His artery repair scar is healing nicely.  This kid is all slashed up.

He has been stable with his blood pressure but still running a high pulmonary pressure. This I am told will be a months long process to reduce it. A new medication is being started to help with that, very, very slowly. In fact so slowly it is going to take 5 days or so to inch up to the lowest dose recommended for his size. This way he can acclimate to it and it won’t shock his sensitive system. This will set him up to smell like a rose. We need to avoid the shit piles from here on out.

He is developing a little bit of a bed sore, so he has really been turned a lot today. This helps offset the pressure. Because he has gotten so skinny, his bones are more pronounced so they have to stay covered with these special adhesive pads. He has them all over the place. Elbows, heals, back, hips basically any place there is direct pressure when he lays.

Ethan did in fact get an X-ray today. His doctor decided the X-ray holiday was a terrible idea and cursed whomever made that decision.  X-ray came right after rounds. It looked mostly unchanged and no new white spots which is good. 

Ethan’s nurse has been trying to keep a decent fluid balance all day. Not too much, but not too little. It doesn’t sound hard but when you have to account for every ml going into his body it becomes much more difficult. She has done great. 

Ethan is almost done with his Shepard’s pie. Tonight he gets a new bag of food. It is the same mixture as last night, but I have decided that if it had a flavor, it would be steak and potato’s. 

Tomorrow Ethan will have another echo to assess the fluid around his heart and to see if the lungs cleared up even more.

I tried, with Paul to get Ethan’s FAFSA federal aid filled out with the help of Paul. We got through a good portion of it. It ended with Paul swearing, me laughing at him and then we took a break. Good times.

I am glad it was a boring day. I don’t want anymore excitement until we bust out of here.