2/4 9:30 pm

In the middle of the night Ethan had to use the bed pan. There was a low sided, more stealth and aerodynamic bed pan and one that resembles more of a toilet seat requiring a wider clearance space. They sit side by side in the room and we have found the stealth mode more comfortable for Ethan. We continue to have both models available though. 

Ethan used the bed pan with the curtain shut and stood on the other side of the curtain as his voice is still weak. This is not ideal for a teenage boy but at this point Ethan doesn’t give a rip.  After going 25 days without a bowel movement, any movement is a joyous occasion.

One he was finished I went in to help him.  I then peeked my head out to the nurse and told him “hey, just so you know, Ethan went to the bathroom in his bed pan.” I paused and then very seriously told him “I also went to the bathroom in the other bed pan and they both need to be emptied.” Just to be clear, they way before pans work is you put a “chuck” over them so it isn’t messy at all, clean up is relatively easy. I only share because I had never known or seen how a bed pan was used until I came here. I just never had a reason to know.

The nurse looked at me with wide eyes. “Oh.” I started cracking up and said “no I didn’t...just kidding.” He then looked at me and said “That’s interesting “mommy and me” time.” We were dying at the thought of it actually happening.

 We have to cushion all of Ethan’s joints because they are so prominent that he is teetering on having pressure injuries. He has “the squishy things” which are moldable rectangles that offer support. It’s kind of like they are filled with silly putty.

Then there are gel filled round little sacks that you can insert under the joint. We call them “the boob” as they resemble a breast implant.  It is not abnormal for myself or Ethan to say “where’s the boob?” Or “can you hand me my boob” or even “ i just dropped my boob don’t trip over it.”

As I tucked Ethan into bed that evening I said to the nurse, “if Ethan asks for “the boob” please know that he is talking about the orange gel joint cushion and not a part of the body. He is not a pervert. I felt it was important to warn him.

I went on to say that I would have been mortified if he asked him for the boob and I woke up with him trying to breast feed Ethan or something. I also didn’t want him to secretly judge me for what he thought was a mom still breast feeding her 17 year old. To be clear....I don’t breast feed anything at this point in my life. He was cracking up at the thought.

Around midnight I heard Ethan calling me. I woke up and asked him what he needed. He wanted some popsicle that we may or may not have been letting him have. 

When I got back Ethan’s nurse offered to put up the decorations we had for Ethan.  I took him up on this offer. He had even stopped and picked up some decorations for Ethan too. So sweet!

I told Ethan I was going back to bed.  I heard him calling me around 5:00 am. I woke up to ask him what he needed. He said that he just wanted me close (insert my heart melting). I made some coffee and sat with him in a nicely festive birthday room.

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At 6 am Ethan’s nurse came in and said “Ethan....I have your birthday methadone.” This hit my funny bone for some reason.

Ethan’s doctor walked in and asked Ethan how he slept. He didn’t sleep well.  He then said I slept great because he was calling me many times and I never answered. He also had the nurse try to wake me up with no luck. Truthfully I don’t think the nurse tried that hard but it was funny he called me out for it.

A little while later I told Ethan I was going to run to the shower to get it before anyone else.  His face twisted up into a sad and worried look. “What’s wrong?” I asked

“I just wanted to spend time with you.” He said.

So I rescheduled the shower and went later.  He got to talk to his dad on the phone and at the end of the conversation he was so upset because he was missing everyone at home. He just wants to go home.

I had to contact the environment services department at the hospital today. We have a Mad Pooper that is fecally destroying the bathrooms and then leaving it as an artistic masterpiece for all to see in the bathroom. It has happened a few times in the last week. I saw this sign ha going up. Also, in the one bathroom I walked in and walked right out. I was somewhat curious to wonder what the jell happened in there. How did it get on the wall? Are you kidding me? I hope these people don’t hunt. If they hit their target like they hit the toilet...all the wives and children are in danger of starving.

People started to stop by first thing in the morning to wish Ethan a happy birthday and make his day special. Ethan’s cardiologist is NYC wasn’t here today so she arranged to face time him.  We talked about how nice it was that even some of them stopped by before their shift because they knew they would be too busy later. They made time for him out of their busy day and how special that was.

Ethan tried some chocolate pudding and liked that. 

PT/OT aka traveling comedy duo came and got Ethan into a chair and had him take a couple steps, assisted of course to get him to the wheelchair. We got him all cozy. 

Ethan’s transplant team stopped by to wish him a happy birthday. They gave him a card and some scratch offs which he was excited about. He takes after me. I love scratch offs too. We included his scratch off in his PT/OT. He lost on the first ticket and won $10 on the second ticket. He then got tired and saved the third ticket for later.

Every single person on the floor went out of their way to stop by and wish Ethan a happy birthday. People were singing Happy Birthday to him. Then people that had worked with him that weren’t on the floor came up and visited as well. One of the doctors made an ice cream run. A couple nurses came in on their day off. They took time away from their busy lives for us. They will never know how much that is appreciated.  I know how precious days off are. 

They brought a carvel cake because they knew that was his favorite. One brought Ethan a box of “damn popsicles”, Bomb pops to be exact. Ethan’s favorite. They brought him a gift bag stuffed with all sorts of goodies for him. It was so nice. They have put so much work and love into this kid. I just know he will pay it forward for life.

Ethan has a nurse today that used to work in Rochester. She worked with Ethan’s current cardiologist. She also watched Ethan’s transplant surgery and saw both hearts, old and new, side by side. She described what the bad one looked like and what the good one looked like. So cool.

Ethan was able to eat some carvel cake. After a couple bites he started to wretch and yawn. I asked the nurse if he was due for any medications as this looked like withdrawl to me. I looked at the clock. 12:03. He needed his next dose of meds. He felt nauseous and was wretching for about 5-10 minutes. 

He then looked so upset. He was trying not to show it but I just knew he was upset.  I asked him what he was thinking about and he said he felt like a failure because he thought he over did it. Tears starting pouring down my face as I looked at him, seeing him as anything other than failure. Failure is not on my list of words to describe Ethan. Never has been.

I enlisted the help of OT/PT to help cheerlead for him and we pointed out all the wonderful things he accomplished today. I think he started feeling better knowing that he in no way caused himself to go into withdrawl. He had a busy good day. This kid has touched everyone’s heart and they have touched his. I am one proud mom.?

He then did some PT sitting to standing exercises. He was tired and wanted to lay down. He knew he had a zoom with the grandparents at 3:30 and didn’t want to miss it. He fought falling asleep. He then took a bit of a nap after than zoom call.

Ethan’s breathing machine was removed today (HOLY CRAP!) and he is just on oxygen via nasal cannula now. Huge step. I requested a rocking chair in my room to fill that gap in. 

A rocking chair would help my back. I am constantly on my feet. Ethan gets hot, wants the blanket off and then cold and wants the blanket on. He wants ice. He wants his spritzer fan full of ice. He needs to turn. He wants to sit up but then lay down. He wants the tablet. He wants lubricant in his eyes because they are dry or to have his teeth brushed. He is still confused and on sedation. Weaning sedation but still he is not clear headed. His meds make him feel sick and he is suffering from withdrawl. So he feels like he needs to vomit.  If anyone thinks I have any free time to just sit around please punch yourself for me, because I am hopping. Please know the nurses are doing their part as well. He just has a lot of things he needs and is unable to do himself yet. I am tired.  I don’t think a rocking chair is unreasonable.

Ethans cardiologist from Rochester called and talked to him vi speaker phone. He let him know they thought about him all the time and he is doing a great job.

Ethan was able to do quick face times with Avery, Paul and Jesney (they were all there). He liked that. It had to be cut short because he was having a pain that needed to be addressed. No big deal. Just heartburn.

I am thankful for every person that took the time to send Ethan a birthday wish. That is so sweet. It really made his day special.