1/13 7:15 pm

Ethan has finally gotten to a stage of OT testing today. I had OT (occupational therapy) come and assess him and make sure I am stretching him correctly and see what else I can be doing to make sure Ethan is set up for success when he starts to stand or even take his first steps.  Ethan has kept his eyes closed most of the day but has participated in the PT and OT that I have done with him. 

I had stroke boots and stroke arm support on for 3 hours and then off for 3 hours. I learned a few new stretches because OT said his hamstrings were very tight.  His right shoulder is also very stiff.  

Ethan’s OT brought a picture of Janice from Friends and we taped it on the dialysis machine. I now say “SHUT UP JANICE” in a snarky tone whenever she makes noise. It is so loud and obnoxious. Also she flashes colors....a real drama queen.

Today I was allowed (I was not qualified yesterday) to take care of Ethan’s eye medications. I feel like they look less red today. I could be biased as well. (I might just be being a jerk about it too).

I did 10 flights of stairs. Yeah! 

I ran into two of my most favorite nurses today doing my laundry. We chatted for almost a half hour. It was nice to share a laugh with them.

I also got to visit with Julie and Zach, the family from 5 miles down the road from us in Hamlin, that also had a transplant 3 years ago in NYC.

Ethan has been weaned slowly off an opioid to help combat delirium and withdrawal. He is getting different dosing of the drugs he has been getting. When they wean off of one, the may increase another slightly, taking in to consideration the effects it may have on his blood pressure and heart rate. They wanted to turn it off completely tonight but I just wanted to cut the dose in half and see how he does with baby steps.  I didn’t want to go into the evening with drastic changes of less sedation.

They have also switched his feeds to a less concentrated dose at a higher rate to resolve his unhappy gut. 

We are down to 10 pumps. Ethans vent settings have been weaned as well. They are going very slowly. I am insisting to go slow because he seems sensitive to big changes. Overall lots of baby steps.

We have another wonderful nurse tonight. She was the one that got Ethan a Christmas present. So sweet. She is by far the quietest nurse we have had.

Maybe shitty days exist for us to appreciate the good days even more.

I am finishing the evening with a margarita. 😊