2/16

Over night, at midnight, they came in to do an ultrasound on Ethan’s neck.  When he had his dialysis cannulas relocated to his neck, they made a tiny incision past it that was closed with one stitch.  The stitch was taken out two weeks later and under where it was there was a small mass.  A week passed and it didn’t decrease in size. It kind of looks like a nipple on his neck. They found it was encapsulated and dense but that was about it. Apparently human reports do not come with any further recommendations like animal reports do.  So we will see what the plan will be.

Janice came down at 5:30 this morning. Thanks Janice. What a way to wake up. Her bitching with her robotic series of panicked beeps. The nurse was unable to return the blood. I told Ethan he may feel tired today and tomorrow. He was panicking because Janice makes LOUD unfavorable noises when she isn’t happy. Hence, the Janice from Friends reference.  Ethan thought something was terribly wrong as two additional people rushed in to help our nurse. Everyone on the floor now refers to her as Janice. Even the doctors during rounds.

Then this morning right before rounds we were approached with bittersweet news. We got the news that we were going to be transferred out of the cardiac ICU to regular ICU.  This is good news because it means that Ethan’s heart has become strong and healthy to no longer require such intense cardiac support.

This news devastated Ethan.  Tears welled up in his eyes as the thought of leaving all these people that have saved his life, literally, cheered him on, visited him, let him borrow things to make him more comfortable, he wouldn’t get to see as often.  I felt the same way too. All of these people have left footprints on our hearts. We have laughed together, cried together and they have only showered us with kindness. I will forever be grateful for each person that went out of their way so that our day could be better. I saw Ethan getting upset. When he gets upset, I also get upset. Now we both had tears in our eyes.

“This is hard news, but it is good news.  You aren’t sick enough to be in the cardiac ICU. You are getting better. This is one move closer to home.” I told him.

I left him alone in the room and collected myself the best anyone could after having a good cry with their son. I wiped my tears and looked at him and said what any mom would say.  

“Is my mascara ok?” I asked

“It looks good.” He said

Off to join rounds while I processed our new situation.

At rounds it was brought up again to start this medication. I brought up my concerns again and the doctor explained that they were going to do a wean on one of his drugs that can soften his blood pressure. Then they won’t have to use the other medication that was suggested. Phew! Good plan.

I also let them know that i had independently contacted the dietician. I have been keeping a food diary for Ethan for the past few days. I want to present to the dietician that Ethan can have his feeds turned off during the day (reducing his overall fluid in take), so we can work toward the goal of HD dialysis.

I went back in the room and started packing everything up again. I had a sinus headache in my eyeball that was super annoying but pushed through it even though I didn’t feel like it. Thank goodness for the help. It took a few trips and a lot of help but we were able to get everything. 

Ethan, still in cardiac ICU spent his last moments there walking the entire floor, from room 15, all the way to room 2 (our original room) and back. This is the farthest he has walked to date. He had the least amount of assistance as well. Wow! Ethan kicking ass! He did complain that his legs and feet were sore. He did say that he is glad because it means he is getting stronger. We prepared our final walk through the floor saying goodbye to all of our favorites. 

We began our journey upstairs to the 11 th floor. Our view is different and our room is much smaller. But as Ethan said today I am going to do everything in my power to get home as fast as I can. It means I have to push through and kick ass.”

Ethan was disappointed by the size of our room. It is small. However, it has a floor with two parent bathrooms with two showers instead of one. It was the floor we were originally on back on November 11 th. Our nurse was the same nurse. I think back to that was the beginning of our journey. We had no idea what our stay would be like. Wow!

I redecorated the room (again) and unpacked everything. Phew! What a big job. Ethan took a hard nap. I looked at him so cozy under all his blankets and I was a little jealous. I looked at my new bed. A vinyl couch.

Then I had to wash Ethan’s hair because it was getting kind of gross. Mini spa day. Apparently I am not as good at it as the nurses. I will get there.

Ethan was freezing today with Janice running. He had a heated blanket on high, covered with his double layered blanket plus another blanket. He was given some shirts and a hat from Greece Ridge Fire Department, the firehouse my Dad worked at before he passed away 26 years ago. Very cool. I have fond memories of playing hide and go seek on the fire trucks with my brother and going to the “weight room” to work out. I also have great memories of all the pranks he used to play on people. 

The dietician came and I went over everything Ethan had been eating. They currently allow him to be off of feeds for 4 hours a day. Other than those 4 hours, he has a belly full of formula. How is he supposed to be hungry? So I proposed that his feeds get turned off at 8 am and turned back on at 5 pm. This will allow Ethan to feel hungry and eat more. Together we came up with a plan to make this happen. As long as Ethans belly cooperates, he will get a 9 hour break instead of a 4 hour break. Woo hoo! This means Ethan will be taking in 1100 ml’s per day with feeds. His total liquid intake to be switched over to HD dialysis when Ethan achieves 1500 ml or less. 

 Ethan also has started swallowing tablets or capsules for the majority of his medications. This also cuts down the amount of liquids he is taking in. I am hoping we will transition to HD in the very near future. Ethan will have to stay in ICU for a number of days as he is adjusting to HD dialysis. They will make sure his kidney stays happy. Then we will graduate to the regular floor. After that, we will be transferred. We are getting closer to home.

As we settled into our new digs, the faces are friendly but less familiar. It is sad to leave our network, but we have graduated. We still have a long hall to walk down to get to recovery but we will do it. One step at a time.

As Ethan says “I am living my life 1/4 mile at a time.” Now cardiac ICU is in his rear view mirror.