💪🏻1/18 8:15 am

 Ethan had a restless night. His fever went up to 102. He was weaned down a little in one of his sedatives. He misses it. We are going to have to suffer through these bouts to get through this. They are exhausting. Ethan is smart. He tries to inch his way from one side of the bed to the other to get off. I finally put the guards on the bed knowing it is against hospital policy, just for piece of mind.

He was trying to hoist himself out of bed, on a healthy dose of sedatives and pain killers, dialysis and a breathing tube, he didn’t care, he was leaving. Except, he wasn’t because his mean mom made him stay in the bed.  I did end up putting myself in time out for a few minutes to regroup with my frustration. When I sat down the nurses stepped in and took over. It was so great.

Xray this morning was a bit of a circus. Ethan is moving all over the bed, not being still. He earned a second xray because his stomach was so distended. He is just not fond of the bathroom situation. I fear he is holding it. It is visibly sticking out.

He did give me a hug this morning and didn’t remember what any of the machines did.  We went through it again, what all the machines do. 

Ethan threw the middle finger at Janice when she beeped. I encouraged it. I also laughed. Janice is so obnoxious.

Ethan did well on his weaned vent settings and he will go down on them more again today. I am worried about the antibiotic stopping. I hope I am wrong but if he declines over the next few days I am going to be frustrated. I will be keeping an extra close eye on it and become a squeaky wheel. You can be a squeaky wheel without being nasty. I will be a polite squeaky wheel. We are all working toward the same goal.

Tomorrow Ethan will get another echo. It will be interesting to see how things are with his right side now that the pulmonary hypertension medications are weaned. 

Last night one of his nurses came in our room and was letting Ethan throw a stress ball at her multiple times. 

Ethan is now resting with a wonderful hug of sunshine streaming through the window. Man, the sunshine has been a blessing for my mood.

We are going to try and make more strides with PT today. Yesterday I had him doing shoulder circles. Today I am adding in him trying to touch his thumb to each finger. I hope that they start having regular PT/OT visits as I am kind of winging it a little bit.