3/1 7:40 pm

Ethan had a really good day today. I had him up, dressed and stretched for PT/OT. 

He ate a decent breakfast and we got the news that dialysis was later in the day so that PT/OT could actually happen.

At rounds we got the news that they were going to discontinue Ethan’s heparin drip which will allow a little room for liquids to be taken orally for Ethan. It also means that he will have gotten rid of his need for the constant pump. His feeds go through a pump at night but during the day....he will have NO PUMP!!!! What????????

He also was going to get out his arterial line. Wow! The bad part is, he will have to be poked daily for blood draws. But this kid has had an organ removed, a blood poke is nothing. His scars are a badge of honor for his kick ass-ism.  (Which is totally a word...not up for discussion.)

Once his arterial line is out, HE CAN MOVE to the 6 th floor!!!! This is the regular floor. Not an ICU. This means we get our own bathroom. It means I can stop hovering over the toilet and actually sit down (after a proper cleaning of course). It means Ethan can shower. In a shower. Ethan can poop on a real toilet. It also means Ethan is getting better....but the bathroom thing.....I almost cried over. The move will take place at some point over the next few days.

Rehab has been contacted about us and we are on their radar. Apparently dialysis is complicating things because Blythdale is so far away from the hospital, transportation is an issue so they will hook us up with a dialysis center closer to Blythdale.

Not only did Ethan walk the farthest he has walked yet, he did it with fairy minimal support!!!! He walked down a very long hallway and back. All the way to the end and back.

I then pushed for Ethan to be able to go visit his BFF nurse from 9Tower. We got the green light and with myself and three other adults, we started the field trip.

 It was Ethan’s BFF nurse’s first day back from vacation and we have not seen her in a couple of weeks. We set it up so we could surprise her. I had a sparkling water ready for her. We found out where she was and took the back way down a less traveled hallway to bypass the main floor. It dumped us right out at her work station and I think we made her day! She made ours. He gave her a big hug! As he sat back down in his chair he said “I love you!” to her. Which melted my heart.

We then wheeled him down the main floor. He got to see a bunch of his medical friends. They were all saying hi to him and fussing over him. Down the hall a little more the doctors were doing rounds and had to make room for Ethan to get down the hallway and they stood off to the side as if a parade was going through. I think Ethan loved it. It totally made his day.

Dialysis started and he skipped his lunch. He promptly fell asleep from his overwhelming morning. They changed Ethan’s time to 4 hours of dialysis. The goal was 2 liters off. Well Fran was up to Janice’s shenanigans. She quit about 40 minutes early. His 4 hours was cut down to 3 hours and 20 minutes. They were able to get 1.6 liters off. Yeah. This allowed him to drink 12 oz between now and 7 am tomorrow.  Who knew this could be so exciting as well as stressful. 

We talked about the fluids “counting toward calories”. He just wants to “enjoy a nice glass of ice water.” He will get ice water but we are going to try to add some ensure as well.

As the day went on, the arterial line stayed in. They went to take it out around 5:00 pm. I stopped them. 

“What is the advantage of taking this out now, instead of after his morning labs?” I asked. This is what they use to get his lab work to avoid getting poked with a needle. 

“He will gain about 1 oz of fluid that he can drink.” 

“That’s it?” I asked.

She hemmed and hawed “yes”. She then started to say that if I wanted we could leave it or we can pull it and free him up so he can drink more.

“Ethan can’t control many things but this is something he can have a choice with. Let’s ask him.” I suggested.

She agreed that we could do that. Ethan chose tomorrow morning. Good choice.

Lastly, this shirt arrived. We love it. It’s perfect. We don’t know who it is from, but thank you!

Happy Birthday Lous and Craig! 🎂🥮 🧁