3/18

The morning was rough.  We found out more why the 3 hour procedure took 6 hours. Ethan can’t straighten out his left arm yet. It is still unable to become straight since the stroke.  Well by the sounds of it, the surgeon had to do twister to do such a delicate surgery. Right hand yellow, left hand s sole blade.

The surgeon also said he was being very careful since some of the vessels had scarring from his arterial line and iv’s he had. This is the same surgeon that would be doing Ethan’s kidney transplant if his kidney doesn’t start behaving.  However, Ethan did make 37.5 ml of urine today.

Because Ethan’s procedure took WAY longer than it was supposed to yesterday, Ethan missed one of his methadone doses. That put his body into withdrawl and it caught up with him today.

Ethan slept off and on until almost noon. He just needed to catch up. When he was up, his face was in a bucket until the anti nausea kicked in. His pain was manageable with Tylenol. I still maintain this kid is tough as nails.

OT was so fun today. Ethan was sort of bummed because they had to hook him up to a heparin drip today. This will only be for a few days. This is because they had to withhold his Coumadin for the vascular surgery. Well they don’t want his clot to worsen or to develop a clot where he had surgery. The heparin will be used until the Coumadin builds up in his blood stream. Heparin takes less time to get into your system than Coumadin.

Now Ethan is tethered to a pole. He was bummed because they had just told him his will be getting blood draws every 4-6 hours until Sunday. This will allow enough time and can pin point when the Coumadin level is therapeutic. Then waltzes in our ground angel of the day. She said “Ethan, I have a surprise for you.” She was just in time to witness Ethan take a verbal gut punch from the doctor. It almost happened in slow motion.

“Will this affect my fluid allotment?” Ethan asked

“Yes, you will get 8 oz less per day to drink, because we will be giving it to you in your iv.” The doctor said.

He tried really hard to keep a calm exterior, but I watched him emotionally implode. The ground angel swooped in and helped him avoid processing that information in the moment, with an audience.

He took a moment to regain his composure as we watched the doctor leave. We then focused on the “surprise”.  This ground angel had taken the time to print off a whole bunch of Sasquatch pictures and Ethan had to walk around and find all the signs of Sasquatch. It was fun. It was even more fun to listen and watch others see random Bigfoot silhouettes hidden all around the floor. They were confused. We were laughing and it cheered Ethan up. He was even laughing by the end. She was magic today. I made sure I let her know.

We then had counseling about rejection, what it means, it’s threat and basically we will call NYC whenever we have medical questions. They have to approve any supplement or medication he is prescribed, forever. The team has to make sure that any drug or supplement will not interfere with his current repertoire of medications.

The surgical team stopped by and took the bandage off Ethan’s arm. They felt it and listened to the flow of blood through the area. 

One of the ladies who is helping to coordinate our  move to rehab come in. She visits daily. She asked Ethan about his surgery and how it went, how he was feeling, blah blah blah. Ethan matter of fact OT answered her.

“The surgery was twice as long as it should have been, because my body is a shit show.” He said. 

He can always make me laugh and he is not wrong. He even laughed with me after he said it.  It probably was because I almost fell out of my chair. It was the most accurate description of his medical history that I have heard yet.

We had a late lunch with our privacy sign up. Ethan was a bit tired of the interruptions. After an hour I took it down. I made Ethan do another lap on the floor. He snacked and then ate dinner. We started to try and catch up on school work. It’s hard when there is a shift change and hourly meds. Some arrive on time. Some don’t. This causes multiple times the nurse comes in the room. He has to have his feeds hooked up. Another blood draw.  We got a few questions done on homework but it wasn’t the best for “learning”. I am hoping rehab is a bit more private.

We did it. We got through another day. My bright spot for today...the lady that was next door to us on 9Tower as well as 11central and close to us on 6tower was finally able to take her 4 month old baby home today. I am so happy for her. She lives close by, but I have seen here almost every day for the past 10 weeks. Her baby was almost as cute as Ethan, but I could be biased. He was really cute though.