12/20 7:40 am

 

Just look at this mess of IV lines.

Ethan had an ultrasound done last night to look at the fluid around his lungs and heart that has collected. Because they saw fluid, he got an X-ray holiday today. They are going to wait for tomorrow to see if the diuretics work. Hoping for a change.

His diuretics are working VERY well as far as an output standpoint. So hopefully by tomorrow his X-ray will be much improved. It also gives him another day on antibiotics to help lessen the opacities in his lungs.  They want nice, healthy lungs before they really start to change things. They are moving very slow to make sure it is don’t in the most careful way for Ethan. 

Good news, they pulled out one of Ethan’s emergency triple lumen femoral central venous access line. It is essentially a 7 French or 13 g needle. It’s a decent size and was about 7 or 8 inches long. Things coming out is good.

Last night Ethan’s blood pressure had increased. It’s like a fine tight rope walk. What am I going to do with this kid? They were luckily able to give medication that brought it down within the normal range.

I am used to seeing Ethan motionless everyday. It doesn’t mean I like it or that I don’t want it to change. It’s hard to explain but looking at him so sick somehow it masks how sick he is for me. His red and swollen eyes are still taped shut. The device strapped to his face that holds his tube in place. His sparse beard frames the lower portion of his face. The tube sticking out of his mouth, surrounded by the most chapped lips. Those lips get so much chapstick yet remain dry and cracked. This is unfortunately what I am now used to him looking like.

His iv lines look like a bowl of spaghetti (without the sauce). The clunky pumps are surrounding him. It doesn’t bother me as much as it used to, it’s weird what your brain does to adjust to crappy situations. It conditions you so that it becomes your everyday life, and to just deal with it I suppose.

They started feeding Ethan with IV nutrition. They can’t do oral feeds while paralyzed because the food would just sit in his intestines and essentially rot. This causes a whole new set of problems so we are just going to and that.  So they brought his food last night. A big bag of yellow fluid. Paul and I were laughing and decided it was Shepard’s pie. Ethan is getting a healthy dose of some Shepard’s pie IV. You have got to see the humor in things. Laughter is the best medicine.

Last night they also took the leads off of his head.  They use this special oil to dissolve the glue they use to connect the leads to his head. His hair was disgusting. His nurse gave him a good hair washing and now he looks nice and clean.

My meal today is slow and steady with a hearty serving of patience. And maybe a cupcake. Who doesn’t love a good cupcake?