1/24 7:50 pm

Ethan rested a lot today. He is pale. He seems weak. But man did he do his best to do PT this morning. We have done little bits here and there.

He got another transfusion early afternoon to help him feel better. They came and plugged him into the blood. 

Ethan asked to have his stroke boots on.  He actually doesn’t know he had a stroke yet. So we just call them boots. So I strapped them on which is like trying to put lace up boots on a moving octopus. All the Velcro straps stick to themselves, I rip them off and then they stick to the blanket, or the bed or the fabric on the boot. I often end up saying a string of bad words while trying to put these stupid things on.

I finally got both pair of boots on. Phew. I to wash my potty mouth words out of my mouth and take a nap after that. I then apply the artificial tears in his eyes and he starts pointing to his foot. 

“What’s the matter?”

He mouths the word “boot”.  “Your boot?” I ask.  He shakes his head yes.

“You want your boot off?” He shakes his head yes.  I counted in my head to soothe my frustration so he couldn’t see it.

“Let’s keep them on for 10 minutes. Would that be ok?” He shakes his head yes. At least I will get 10 minutes more out of him. I continue to apply the eye medication.

Ethan starts freaking out about the boots in an alarming way. “What’s wrong?” He now has his face crumpled up and red trying to scream but no sound is coming out. Oh my god? Seems like an over reaction to wanting the boots off. I rip the boots off and see blood all over the inside of them. His foot was bruised. It appeared the IV catheter was no good and the infusion we were giving went outside of the vein and then was oozing out around the catheter.

I asked the nurse if she could come help. We got him all cleaned up. The IV placement team came to put another IV in so he could continue his infusion. Poor kid. That must of hurt. Not wonder he started panicking.  I would have too if I thought I had to endure that for 10 more minutes. We then took a break from the boots.

Ethan and I have developed a language without speaking. He was whacking the side of the plastic railing on the bed to get my attention when he needs something.  I snagged a syringe case (which appears to be slightly pornographic) and taped the lid on.  I told him to whack it, instead of his hand.  He is so gentle when he does it. 

He tapped on the bed for an itch on his leg. He tapped for help with the blanket. He tapped for his phone. He tapped for a scalp massage. He tapped for another itch.  Each time I would satisfy the request and then go and sit down.  He tapped again, I stood up again and asked him what he needed.  He mouthed the words thank you and held his arms out for a hug. Of course I gave him a big hug and told him I would get up and do whatever he needed me too except when I am sleeping (because I am a better mom if I am rested).

There are no vent settings. He feels tired today and ultimately decided to skip sitting up as well as more PT. I will keep asking though.

Ethan last minute after resting all day long wanted to sit up. “Really? You don’t want to rest?” He shook his head NO!  We rounded up the troops. He was sore this morning. “Maybe you could sit up for 2 minutes?” He shrugged his shoulders.

I started the stop watch.  He sat up. He looked a little more relaxed.  The clock reached one minute, then two, then three. Each minute was cheered on by all of us. One of the guys wanted to talk cars. One of the nurses was going to text some other nurses to tell them how awesome Ethan did today. Then minute four, minute 5 and minute six came and went. Each one getting louder and louder cheers “You broke your record!!!!”  Minutes seven, eight and nine came and went. “Holy crap!” He started pointing to the hall. The one RT guy asked him if he was pointing to the elevator? He wanted to escape? Ethan shook his head yes and started stretching his leg to the floor. No no no we all shouted. “What are you going to do call an Uber?” Ethan shook his head yes.  

Minute ten, and eleven came and went!  Then minute twelve came.  He decided he was ready to lay at twelve minutes and forty five seconds more than double his record. And that was my extra bright spot for today!